Since being diagnosed with ME I've done enormous research and delved into every media report/story about the illness and have campaigned to have the illness more widely recognised and after reading some of my earlier posts I'm beginning to realise how selfish and self centered I really am and for that I apologise. What I have failed to discover is that like ME there are other illnesses out there that people don't recognise or acknowledge. These are known as 'Silent Illnesses'. Its an illness that is going on on the inside of the body as well as the outside but no-one gives it the time of day. These illnesses are debilitating and hurtful and horrible for the host who have them and they suffer, sometimes in silence, sometimes with conviction and sometimes shouting from the rooftops to just cope with each day with their symptoms. I applaud these people and just because we may not look sick on the outside doesn't mean we aren't sick on the inside. So for this I am learning more about these 'silent illnesses', some more than others. I will never be an expert but I do think that if I give some time to learn more about these illnesses the way I would like others to learn about ME then these illnesses wouldn't be as silent anymore and if each of us gave some time then we can drop the silence altogether.
Some 'Silent Illnesses':
PCOS - Polycystic Ovary Syndrome
MS - Multiple Sclerosis
Fibromyalgia
Diabetes
Mental Health
PTSD
Cancer
Crohns Disease
Ceoliac Disease
IBS
Sunday, 29 January 2012
Blimey.....Its Been A While
Yes, it has been a while and I apologise. Two apologies in fact as I seem to recall in my last post I was going to make more of an effort to blog and I haven't. In my defence I have been settling into my new home in yet another new part of the country. Actually, that's not entirely accurate, I know this part of the country well as I originate from here but it is still a move with the Armed Forces. I have also been unwell. The ME has struck again, in fact what it did do was lull me into a false sense of security. My symptoms seemed to ease for quite a long time. I was only having one or two bad days a week which for me was pretty good but then it all changed. Those one or two bad days turned into three to four days to practically every day I would feel like crap. Socially though I was improving, meeting some fantastic people, settling in really well and aside from the illness I was happy. I still am if truth be told but I've had some ups and downs and some deep drops to get here. My health isn't improving but I'm managing it with the support of my family and the amazing friends I have made here who aren't put off by my ME. They help me, not necessarily physically in cases but emotionally as they constantly remind me that if I need anything (and I need to learn to ask for help) that they are there, they will come and they will help even if its to just stick the kettle on and make me laugh.
I have also joined Twitter (Becs654) and have found a lot, and I mean a lot of people that have ME and Fibro and there seems to be some debate going on as to the classification of ME and CFS (Chronic Fatigue Syndrome). I have read this debate go on, even commented on a few 'tweets' and the more and more I read the more and more I am starting to believe the patients and not the medical professionals in their understanding of ME. Currently, ME is classified as a Neurological Disorder, which I agree with but it is still being tagged with the diagnosis of Chronic Fatigue Syndrome. Whilst I do believe that CFS is a REAL medical condition, it is not a significant diagnosis for ME. Chronic fatigue is just that, chronic fatigue, it does not define ME. It is one symptom, whereas ME has a wide range of symptoms of which chronic fatigue is just one of. ME then has further symptoms like severe joint pain, muscle pain, headaches, earaches, sore throats, brain fog, dizziness, insomnia, stiffness, trembles, confusion, lack of concentration, lack of co-ordination, IBS, weight gain and so on. Some people have described ME as being as bad as having cancer but without the terminal issue. I wouldn't know but what I do know is that it is real, its not in our heads and it cannot be treated by CBT or GET or any other therapy to train our brains to convince us we aren't ill, its just a way of the medical profession trying to show the rest of the world they are doing something without really doing anything about it. Which can be said about a lot of 'silent illnesses' which in my opinion is bang out of order. There are new strains of virus's, cancers and other illnesses diagnosed everyday and are recognised within the medical world so why can't ME? Oh, I know why, it has no bio-detector, meaning it is diagnosed once everything is ruled out. Well that shouldn't rule it out as a proper illness. Our immune system is compromised, our nerves are shot, our brain stems don't function normally and our bones are weak yet its all in our heads!?! Well, my head hurts along with the rest of my body and believe me, that feels pretty real to me!
I have also joined Twitter (Becs654) and have found a lot, and I mean a lot of people that have ME and Fibro and there seems to be some debate going on as to the classification of ME and CFS (Chronic Fatigue Syndrome). I have read this debate go on, even commented on a few 'tweets' and the more and more I read the more and more I am starting to believe the patients and not the medical professionals in their understanding of ME. Currently, ME is classified as a Neurological Disorder, which I agree with but it is still being tagged with the diagnosis of Chronic Fatigue Syndrome. Whilst I do believe that CFS is a REAL medical condition, it is not a significant diagnosis for ME. Chronic fatigue is just that, chronic fatigue, it does not define ME. It is one symptom, whereas ME has a wide range of symptoms of which chronic fatigue is just one of. ME then has further symptoms like severe joint pain, muscle pain, headaches, earaches, sore throats, brain fog, dizziness, insomnia, stiffness, trembles, confusion, lack of concentration, lack of co-ordination, IBS, weight gain and so on. Some people have described ME as being as bad as having cancer but without the terminal issue. I wouldn't know but what I do know is that it is real, its not in our heads and it cannot be treated by CBT or GET or any other therapy to train our brains to convince us we aren't ill, its just a way of the medical profession trying to show the rest of the world they are doing something without really doing anything about it. Which can be said about a lot of 'silent illnesses' which in my opinion is bang out of order. There are new strains of virus's, cancers and other illnesses diagnosed everyday and are recognised within the medical world so why can't ME? Oh, I know why, it has no bio-detector, meaning it is diagnosed once everything is ruled out. Well that shouldn't rule it out as a proper illness. Our immune system is compromised, our nerves are shot, our brain stems don't function normally and our bones are weak yet its all in our heads!?! Well, my head hurts along with the rest of my body and believe me, that feels pretty real to me!
Friday, 29 July 2011
Apologies
Hello to all, you've probably been wondering where I've been these past few months. Well firstly I'd like to apologise for my absence, I've moved house. Not much of an excuse I know but many of you would know in this day and age what it takes to move house. Back in the golden age where broadband was just a made up word and the telephone would just plug into a wall socket, moving was so much easier, I imagine. You didn't have to move your satellite dish off the house to put on the new house, get an engineer to come out and re-install everything and then wait for days on end to get that wonderful little signal that goes to a magic box which then lets you view the world through your computer. Not only does all that go on but of course letting everyone know you've moved, the banks, the utility companies, friends, family, new doctors, new dentists, vets, schools etc. Yes, moving is stressful and hard work but its even harder when you are ill. Moving is an activity that demands high energy and when energy is seriously lacking things can seriously take a turn for the worst.
If you're like me and have major OCD issues then imagine being in a new house, left on your own with the kids as hubby is away working and there are dozens upon dozens of half unpacked boxes lying in situ for days. Cardboard boxes and me don't get on well. They are a nuscence, a pain in the backside, inconvenient and take up too much space not to mention unattractive and doesn't go with the new colour scheme I've put into practice.
Now that I've had a few weeks to settle in, boxes have disappeared and things are looking good, my body has decided to punish me big stylie by saying "I've let you move, get the house the way you want it but now its time you do something for me -you owe me!" Well thank you muchly body for giving me time to enjoy my new house and I love the way it looks but that doesn't mean that I want to be in the house everyday either in bed or on the sofa watching my kids have fun outside and having hubby home going out and about. Surely you can give me one day to be a valued member of my family and enjoy time out of the brick cell my house has become?
Lets hope that the next time we move, my health won't be an issue. Yet again ME has taken charge and is calling the shots, pulling the strings and being my puppet master and I am as always, the unwilling servant.
Wednesday, 8 June 2011
Its been really hard as of late. Finally have the long awaited moving date which is now in two weeks and I can't wait to get going although I know the run up to the day and the days after are going to practically kill me. I don't have time to rest beforehand, not with the kids, the dogs and the packing to do as well as the usual household chores. When did life become so hard? As a kid I remember not having a care in the world until I reached the age of 10 then it got hard. Puberty hit, emotions ran high and all of a sudden I was interested in boys, cared about what people thought about me and my appearance and was endlessly worried about not fitting in. Then the dreaded teenage years arrived and I became a recluse. I hid away in my room at all times, not surfacing unless it was for a bathroom break. Believe me, my bedroom as a teenager was like a bedsit. I had my own stash of food, TV, video, computer, stereo, endless amounts of books and things to do. I had decided that in order for me not to worry about fitting in and how I look then I wouldn't bother being in public unless I had to. School was the main reason for coming out of my 'little piece of heaven' and even then, I pretended to be someone I wasn't just so I could get through the day. Its amazing how now I don't give a damn about what other people think of me personally. If they don't want to get to know me then that's up to them, let them judge me on what they see, I don't care. What I do give a damn about however is my illness. ME is STILL so unknown and its even worse when you are made to feel worthless by a complete stranger on the phone who doesn't know you from Adam but is judging you on your lack of income due to having a chronic debilitating illness. That is what has happened to me today with my bank. Because I don't work, have three children to support, are not on any benefits and the reason why I don't work is due to having ME then they see me as a financial risk and have given me 60 days notice that they are going to close my account with them. It doesn't matter that I've been a long standing customer with them, it doesn't matter that I've been financially sound for the majority of my time with them, they still only see my illness as the reason for my drop in income. I feel dejected, humiliated, worthless and I can't help thinking that if I didn't have ME I wouldn't be in this position now. But who can see the future? Certainly not me as if I did, I would have seen this coming and put some aside for a rainy day. But then again, I can't afford to put some by. What I get is what I live off and support my family with and to me, they are more important than having my bank account out of its overdraft.
Saturday, 28 May 2011
Ignorance
I have commented to various people and the cfsuk facebook page that I'm getting sick of fighting. I'm fed up with having ME and fed up with other people's lack of awareness of it. Whilst I am fighting against the illness I'm also fighting for the illness at the same time. Its not nice.
So imagine how I feel when I overhear a conversation between two lads about a fantastic new app they have on their phone. It was an app designed to help you with an excuse to call in sick to work with. As one of the lads was going throughthe list like "the dog ate my car keys" or "i'm not hungover, I'm having my man period" I'm thinking this could be quite a funny app to have but then the lad came out with this one: "i can't come into work today I'm suffering with chronic fatigue syndrome", both lads laughed. It took all of my strength and resistance to not go over there and play holy hell on the pair of them. I wanted to ram the phone down their throats, kick them in several places including their privates and cause serious hurt on them. I didn't for the very fact that 1, I had my children with me, 2, I didn't want to get arrested and 3, I simply didn't have the energy to spare.
It gets me so angry that people don't give two hoots about a very serious condition because they don't know anything about it. Well they should. Its the people who have the illness that whilst trying to get through the day and survive they are also doing their damned hardest getting awareness out there. I applaud you all.
Perhaps I should have gone over to those lads and carefully explained that cfs and me are real and they should take a few moments of their day to put a better use to their phones and do a little research, perhaps then they wouldn't laugh next time.
Then again, they might have just thought I was some random crazy woman!
Friday, 20 May 2011
Low Points to High Points
I'm not going to lie, I've been at really low point in my life for the past couple of weeks. I've not felt like "me" and all the advice I've given out in the past, I didn't listen to myself because I felt like I was just here on this Earth to take up space. Even though my husband and my children were telling me that I was worth it, it just didn't feel like it was enough. I needed to feel worth it, needed to feel like there was a reason why I'm here. Don't get me wrong, I know it all sounds a bit suicidal but I didn't feel like that, I just felt like I didn't know what my purpose was. I still don't for sure but I know that I have had my three gorgeous children for a reason and I've married the love of my life for a reason. Ok, starting to get soppy now, lol.
It was until I finally posted a comment on the Chronic Fatigue UK's facebook page that I started getting the most positive responses from total strangers. Their works gave me the boost that I needed. One person said that I was fantastic for raising three children in my condition and I thought, wow, this person doesn't know me but is praising me for doing what I do everyday and that in its self was amazing. Being a mother is an amazing thing but day in day out when you are at home with your children you do start to feel a little like, what am I doing? Is this all there is to life? But now I think yes, I can do this, its worth it and I wouldn't change it for the world.
Another thing that has amazed me is that strangers are willing to let a part of you into their lives to show their support and provide you with the most encouraging and uplifting comments. It just goes to show that we aren't all loners and keep ourselves to ourselves, we are willing to give a little of ourselves out there and willing to accept a part of other people into our lives.
So, if I can help one person's day seem a little brighter then I know that I'm not just taking up space, I'm here for a reason.
It was until I finally posted a comment on the Chronic Fatigue UK's facebook page that I started getting the most positive responses from total strangers. Their works gave me the boost that I needed. One person said that I was fantastic for raising three children in my condition and I thought, wow, this person doesn't know me but is praising me for doing what I do everyday and that in its self was amazing. Being a mother is an amazing thing but day in day out when you are at home with your children you do start to feel a little like, what am I doing? Is this all there is to life? But now I think yes, I can do this, its worth it and I wouldn't change it for the world.
Another thing that has amazed me is that strangers are willing to let a part of you into their lives to show their support and provide you with the most encouraging and uplifting comments. It just goes to show that we aren't all loners and keep ourselves to ourselves, we are willing to give a little of ourselves out there and willing to accept a part of other people into our lives.
So, if I can help one person's day seem a little brighter then I know that I'm not just taking up space, I'm here for a reason.
Monday, 16 May 2011
Warm Body - Cold Feet
Another thing I'm finding with this ME malarkey is the constant change in body temperature. One of the symptoms is the inability to maintain a normal body temperature. I have found that my temp is never below 37 degrees (not sure what that is in Fahrenheit) so its like I'm always running a temperature.
This has consequences. For example, no matter how much body deodorant I use I will still sweat! Not just the usual body sweat in the sun but full-on-ran-a-thousand-miles-type of sweat which leave those nasty, unattractive sweaty pits. It is horrible. I wouldn't care so much if I had actually ran the thousand miles but this sweat can appear after just sitting on my backside for half and hour. I repeat - It is horrible! On quite a few occasions it has been rather chilly outside and my friends are wrapped up in their winter coats and scarves and I kid you not, I am out in a t-shirt because I am boiling. I get rather a few strange looks on those days and can imagine what is running through people's minds, for example "are you mad woman?" or "I bet she's cold!" Actually I'm not mad and I'm not cold.
I do however, get cold feet. Not talking here about the nervous type of cold feet but rather the physical type of cold feet. They are like foot shaped ice glaciers with toes on the end of my legs. Thick socks and slippers don't provide much warmth so out comes the blanket over my tootsies. this is just in the house. Imagine what its like outside? If you thought I'd look silly going out in a t-shirt in the middle of winter, imagine how I look in the summer wearing summery clothes and full on socks and thermal boots! Don't even want to know about what people are thinking in this case.
Before the ME began I was a very active person who couldn't stand wearing socks. The thought of anything touching my feet filled me with nausea and I could only tolerate wearing shoes and boots without socks but only for the duration of my activity. As soon as I was home, the shoes would come off and I'd be free to walk around the house sockless, shoeless and slipperless. Now that luxury has been taken away and what I hate more than wearing socks is having cold feet and sweaty pits :-(
This has consequences. For example, no matter how much body deodorant I use I will still sweat! Not just the usual body sweat in the sun but full-on-ran-a-thousand-miles-type of sweat which leave those nasty, unattractive sweaty pits. It is horrible. I wouldn't care so much if I had actually ran the thousand miles but this sweat can appear after just sitting on my backside for half and hour. I repeat - It is horrible! On quite a few occasions it has been rather chilly outside and my friends are wrapped up in their winter coats and scarves and I kid you not, I am out in a t-shirt because I am boiling. I get rather a few strange looks on those days and can imagine what is running through people's minds, for example "are you mad woman?" or "I bet she's cold!" Actually I'm not mad and I'm not cold.
I do however, get cold feet. Not talking here about the nervous type of cold feet but rather the physical type of cold feet. They are like foot shaped ice glaciers with toes on the end of my legs. Thick socks and slippers don't provide much warmth so out comes the blanket over my tootsies. this is just in the house. Imagine what its like outside? If you thought I'd look silly going out in a t-shirt in the middle of winter, imagine how I look in the summer wearing summery clothes and full on socks and thermal boots! Don't even want to know about what people are thinking in this case.
Before the ME began I was a very active person who couldn't stand wearing socks. The thought of anything touching my feet filled me with nausea and I could only tolerate wearing shoes and boots without socks but only for the duration of my activity. As soon as I was home, the shoes would come off and I'd be free to walk around the house sockless, shoeless and slipperless. Now that luxury has been taken away and what I hate more than wearing socks is having cold feet and sweaty pits :-(
Thursday, 12 May 2011
There's Something Else Wrong With Me?
I've recently had a wonderfuly (not) stay in hospital. I say stay but what I mean is about 8 hours but nonetheless a hospital trip indeed. It happened on a Tuesday roughly around mid-morning when I was taking my usual 20 minutes on the sofa whilst my 15 month old son was taking his mid-morning nap. I heard one of the dogs start to whine so I got up. The next thing I remember was being on the floor, my head hurting (pounding infact) and not quite sure as to how I got there. I rang my husband which I've trained myself to do incase there is something that I can't quite add up and he came running. Apparently my head was hurting as there was a major dent in it. I had fallen onto a piece of furniture right on the corner and the corner had idented into my skull. I really wasn't with it at this point so my husband phoned for an ambulance.
The first response person came, took an assessment then called and ambulance. The deal was I had to go get checked out properly as I had some sort of concussion. At the hospital, laid up on once of those uncomfortable gurneys, wearing THE most sexiest hospital gown, (showing one's backside off to the whole of A&E is just such a memorable experience) and hooked up to a drip after the fifth nurse I'd seen that day came and took blood, I was feeling like sh*t basically. It would seem that after banging my head my body thought right lets intensify these pesky ME symptoms and make her feel a whole lot worse. I kid you not, I couldn't even tuck my hair behind my ears without feeling exhausted and at that point I got a real insight into how some ME sufferers are, unable to do the most simplest of tasks without feeling exhausted and in pain. I thought my ME was bad but this was a whole lot worse, something I hope not to experience again.
It turns out after the blood results came back that I have yet another infection. They can't say what type of infection and where it is but its an infection in any case. So, more meds for me to take, beginning to feel like a walking pharmacy. It turns out that ME patients are prone to the slightest little bug or virus or infection or any other type of bad germ going. We will welcome it into our bodies and take our time in fighting it off because the ME loves the company. So we feel worse everytime and when we don't have the bug/virus whatever, we fear it everyday. Wake up thinking my throat is sore must be coming down with something and there it is BANG! You're even more ill than you were before. And the more signs to look out for: feeling dizzy, collapsing and smashing your head in!
So the next time I fall flat on my face I'll know I have something else wrong with me, more chemicals will be thrown down my throat and yet more reason to not do the things I'm capable of doing. Its like the ME is saying I havn't punished you enough this month, need to make up for it.
Well thank you ME, much appreciated but enough is enough, I will win in the end so there!
The first response person came, took an assessment then called and ambulance. The deal was I had to go get checked out properly as I had some sort of concussion. At the hospital, laid up on once of those uncomfortable gurneys, wearing THE most sexiest hospital gown, (showing one's backside off to the whole of A&E is just such a memorable experience) and hooked up to a drip after the fifth nurse I'd seen that day came and took blood, I was feeling like sh*t basically. It would seem that after banging my head my body thought right lets intensify these pesky ME symptoms and make her feel a whole lot worse. I kid you not, I couldn't even tuck my hair behind my ears without feeling exhausted and at that point I got a real insight into how some ME sufferers are, unable to do the most simplest of tasks without feeling exhausted and in pain. I thought my ME was bad but this was a whole lot worse, something I hope not to experience again.
It turns out after the blood results came back that I have yet another infection. They can't say what type of infection and where it is but its an infection in any case. So, more meds for me to take, beginning to feel like a walking pharmacy. It turns out that ME patients are prone to the slightest little bug or virus or infection or any other type of bad germ going. We will welcome it into our bodies and take our time in fighting it off because the ME loves the company. So we feel worse everytime and when we don't have the bug/virus whatever, we fear it everyday. Wake up thinking my throat is sore must be coming down with something and there it is BANG! You're even more ill than you were before. And the more signs to look out for: feeling dizzy, collapsing and smashing your head in!
So the next time I fall flat on my face I'll know I have something else wrong with me, more chemicals will be thrown down my throat and yet more reason to not do the things I'm capable of doing. Its like the ME is saying I havn't punished you enough this month, need to make up for it.
Well thank you ME, much appreciated but enough is enough, I will win in the end so there!
Thursday, 5 May 2011
Facing my Enemy - the Stairs
We all have things that we loathe, even the happy go luck people have things in their lives, whether it be an object or a person that they despise so much that they would go out of their way to avoid it. Unfortunately, I don't have that luxury. You see, my greatest enemy, the thing I loathe most of all I have to face everyday. In fact I would go to say I face it several times a day. I'm talking about the stairs in my house.
Strange I know but for someone with ME the stairs can be the worst thing going. Particularly the stairs in my house. They are steep, mega steep and the thought of climbing up them everyday, several times a day fills me with dread. I have even gone so much as to practically live downstairs (good job we have a downstairs loo or I'd be a goner) just so I don't have to literally drag myself up them. On a good day, I can climb them with just the aid of the banister but have to stop halfway for a breather. When I make it to the top I have to sit down for a couple of minutes before carrying on. On a bad day, I have my walking stick in one hand and the banister in the other, putting immense strain on my arms but dragging my feet up step by step. And on a very bad day I have stick, banister and husband behind me practically lifting me up each step! The worst days I don't go up them at all. I am grateful however that they are straight stairs and do not bend in the middle and go round corners.
I look at them everyday and the first thing I see is like that scene in Jaws when Sheriff Brody is sitting on the beach with his wife and he realises there is going to be a shark attack and the camera zooms in on his face but the background zooms out, that's how I see the stairs. I feel like I'm about to climb Everest. By the time I'm up those thirteen steps I am done for the day, completely worn out, out of breath and shaking like a rattle snake. Going down isn't so bad but I feel ridiculous going down them on my bottom like a child would do. Gone are the days when I could run up the stairs, down them, back up again etc. etc. like they were never a problem. I am determined to conquer those stairs one day without needing to take a rest, have help or collapse when I reach the top. For most people a goal in life would be to get out of debt or travel round the world but my goal for the moment is to just climb up those thirteen steps, plain and simple.
Wish me luck......
Strange I know but for someone with ME the stairs can be the worst thing going. Particularly the stairs in my house. They are steep, mega steep and the thought of climbing up them everyday, several times a day fills me with dread. I have even gone so much as to practically live downstairs (good job we have a downstairs loo or I'd be a goner) just so I don't have to literally drag myself up them. On a good day, I can climb them with just the aid of the banister but have to stop halfway for a breather. When I make it to the top I have to sit down for a couple of minutes before carrying on. On a bad day, I have my walking stick in one hand and the banister in the other, putting immense strain on my arms but dragging my feet up step by step. And on a very bad day I have stick, banister and husband behind me practically lifting me up each step! The worst days I don't go up them at all. I am grateful however that they are straight stairs and do not bend in the middle and go round corners.
I look at them everyday and the first thing I see is like that scene in Jaws when Sheriff Brody is sitting on the beach with his wife and he realises there is going to be a shark attack and the camera zooms in on his face but the background zooms out, that's how I see the stairs. I feel like I'm about to climb Everest. By the time I'm up those thirteen steps I am done for the day, completely worn out, out of breath and shaking like a rattle snake. Going down isn't so bad but I feel ridiculous going down them on my bottom like a child would do. Gone are the days when I could run up the stairs, down them, back up again etc. etc. like they were never a problem. I am determined to conquer those stairs one day without needing to take a rest, have help or collapse when I reach the top. For most people a goal in life would be to get out of debt or travel round the world but my goal for the moment is to just climb up those thirteen steps, plain and simple.
Wish me luck......
Monday, 2 May 2011
Medication - useful or just pants?
Through the ages, medicine has been used as a tool to make a person better. Treatments for all sorts of illnesses whether terminal or not have been devised to aid the patient to 'feel' or 'get' better. Can the same be said for ME?
I ask this question as we all know there is no cure for ME/CFS (at this time) and to be honest its the type of illness that possibly won't have a cure, the same can currently be said for Crohns Disease, Cancer, MS etc. etc. but there is medicine out there that can help. Or does it? I have been prescribed three types of medication from my GP on the recommendation from my specialist. They are: Anti-depressant no#1. Apparently I am not depressed but I may end up depressed as having ME can really bring you down which yes, it does. I will say that this one is doing something as I and the rest of the members of my household have noticed that I am not going round the house putting objects into alignment, things aren't colour coded, in alphabetical order, towels aren't straight, there is dust on the TV, the labels on the food in the cupboards aren't facing forward and the doors having been locked, unlocked and then locked again several times in a row. Yes, this has cured me of my OCD. Or has it?
Anti-depressant no#2. This is to combat pain and to help me sleep. Well, it does neither, the pain doesn't go away even when I take extra medication such as paracetamol, end of story.
Sleeping tablets. I have this to help me fall asleep and stay asleep and sleep deeply. Yes, these do do what they say on the packet but after 12 hours they are still in my system and then next morning I feel so doped up that doing anything com pus mentas is out of the question. I have three young children and being practically stoned isn't a good idea when I have to care for the kids. So, these tablets are for 'special occasions' only, when hubby is home and not at work the next day so basically I pop a pill once a month.
I ask if anti-depressant no#1 really works as is it curing me of my OCD or just masking the symptoms? If I stop taking them will the DVDs and the Cd's get rearranged, will the towels be straight and colour co-ordinated and will the tins in the cupboard be face-up? Probably. In fact, more than likely! I will say that maybe it is a good thing that my OCD has been quashed for the time being as no way would I be able to get the rest I need during the day. This would be another great example of when Brain and Body don't get along. OCD is great pals with the Brain and there would be no way in hell I would be letting the Body win.
So at the end of the day, medication seems to just mask the symptoms, not heal them. The pain is still there, there is just a chemical telling your Brain that there is no pain even though the Body is screaming at you going YES, THERE IS PAIN!!!!
I ask this question as we all know there is no cure for ME/CFS (at this time) and to be honest its the type of illness that possibly won't have a cure, the same can currently be said for Crohns Disease, Cancer, MS etc. etc. but there is medicine out there that can help. Or does it? I have been prescribed three types of medication from my GP on the recommendation from my specialist. They are: Anti-depressant no#1. Apparently I am not depressed but I may end up depressed as having ME can really bring you down which yes, it does. I will say that this one is doing something as I and the rest of the members of my household have noticed that I am not going round the house putting objects into alignment, things aren't colour coded, in alphabetical order, towels aren't straight, there is dust on the TV, the labels on the food in the cupboards aren't facing forward and the doors having been locked, unlocked and then locked again several times in a row. Yes, this has cured me of my OCD. Or has it?
Anti-depressant no#2. This is to combat pain and to help me sleep. Well, it does neither, the pain doesn't go away even when I take extra medication such as paracetamol, end of story.
Sleeping tablets. I have this to help me fall asleep and stay asleep and sleep deeply. Yes, these do do what they say on the packet but after 12 hours they are still in my system and then next morning I feel so doped up that doing anything com pus mentas is out of the question. I have three young children and being practically stoned isn't a good idea when I have to care for the kids. So, these tablets are for 'special occasions' only, when hubby is home and not at work the next day so basically I pop a pill once a month.
I ask if anti-depressant no#1 really works as is it curing me of my OCD or just masking the symptoms? If I stop taking them will the DVDs and the Cd's get rearranged, will the towels be straight and colour co-ordinated and will the tins in the cupboard be face-up? Probably. In fact, more than likely! I will say that maybe it is a good thing that my OCD has been quashed for the time being as no way would I be able to get the rest I need during the day. This would be another great example of when Brain and Body don't get along. OCD is great pals with the Brain and there would be no way in hell I would be letting the Body win.
So at the end of the day, medication seems to just mask the symptoms, not heal them. The pain is still there, there is just a chemical telling your Brain that there is no pain even though the Body is screaming at you going YES, THERE IS PAIN!!!!
Thursday, 28 April 2011
Hello - I'm Here!
Ok, today has been such a frustrating day that I want to scream into my pillow and then rip it apart! Sounds harsh I know but at least by doing this I might get noticed more.
What started out as a innocent routine food shopping trip (routine as in once a month when I have the energy for it) turned into me almost getting killed, literally. I was walking through the aisles of a well known supermarket here in the UK, with my husband and trusty walking stick in one hand and the other hand free to grab anything and everything off the shelves when I started to realise that no-one had noticed that my walking stick was visable and they decided to push me out of the way regardless. One woman almost ran her trolley into me as she was too busy looking at different types of eggs. They are eggs woman, doesn't matter if they are free range or not, they still come out of a chicken's bottom regardless! Would someone run a trolley into a person who was in a wheelchair? - No because people see wheelchair users and go out of their way to accommodate them and respect the fact that they are disabled. People see oldtimers with walking sticks and again, people react in a respectful way, even to people who are on crutches and people with pushchairs, (unfortunately pushing my son in his pushchair has got too much at times). But a 30 year old woman with a walking stick - different story. She doesn't look ill so she can't really be ill, she doesn't have a cast or anything so nothing is broken, we'll just ram our trollies into her and kick her stick out from under her - she won't care.
Then there was the car park. Unfortunately, I haven't been able to get a lovely shiny Blue Badge yet so parking in disabled spaces is a no go and some idiot with no children whatsoever in his flashy sports car had just taken up the last parent/child place so my husband had to park quite a fair distance from the shop entrance and carry our 15 month old son to the trolley park whilst I limp along with my stick. Getting into the supermarket was fine, getting out of it was not. Trolley loaded, my wonderful hubby speeded back to the car to load it up then come back for me but stupidly I thought, what the hell, I'll just walk slowly to the car. Obviously people couldn't see me walking slowly, with a silver/grey aluminium walking stick, blue jeans and white, yes WHITE tee-shirt (its not like you could miss me) so this enabled one irate driver to almost turn into me whilst he was looking the other way. Here's a tip people - generally don't turn into a corner whilst looking in the opposite direction, stop first and asses BOTH sides. (and this is coming from someone who isn't allowed to drive anymore)
Then to top it all off, here I was again, after several deep breaths, walking, keeping to one side in a one-way lane, making sure there were no cars reversing out of their parking bays when another idiot decided to turn in the lane heading in the wrong direction, swerve to an empty space and then reverse out of it again literally inches from where I was walking and he looked annoyed that I was walking so close and he had to wait until I had passed him for him to continue, and believe me that took a while. If I could walk faster I would but I can't and its people like these today that just ignore the fact that any joe blogs can be ill and not look it.
For once throughout my illness, today I felt like an inconvienience and I hated it. I'm a nice person, worthy of people's attention and respect that is shown to any disabled person because even if we don't have the guide dog beside us or the use of a wheel chair (I know that a lot of ME sufferers do have a chair and I respect that fact), like it or not CFS/ME sufferers to a point are disabled. We have a dibilitating illness that affects our daily lives even if its just from an hour of sever fatigue to weeks not being able to move, its dibilitating, and its frustrating and I applaud all of us, whether you are bedbound, wheelchair bound, or housebound, or even have a minor degree of suffering, I applaud us all for keeping strong, not letting our illness take the simple things in life such as food shopping, away from us.
Stay strong Spoonies - (hehe, I love that term).
What started out as a innocent routine food shopping trip (routine as in once a month when I have the energy for it) turned into me almost getting killed, literally. I was walking through the aisles of a well known supermarket here in the UK, with my husband and trusty walking stick in one hand and the other hand free to grab anything and everything off the shelves when I started to realise that no-one had noticed that my walking stick was visable and they decided to push me out of the way regardless. One woman almost ran her trolley into me as she was too busy looking at different types of eggs. They are eggs woman, doesn't matter if they are free range or not, they still come out of a chicken's bottom regardless! Would someone run a trolley into a person who was in a wheelchair? - No because people see wheelchair users and go out of their way to accommodate them and respect the fact that they are disabled. People see oldtimers with walking sticks and again, people react in a respectful way, even to people who are on crutches and people with pushchairs, (unfortunately pushing my son in his pushchair has got too much at times). But a 30 year old woman with a walking stick - different story. She doesn't look ill so she can't really be ill, she doesn't have a cast or anything so nothing is broken, we'll just ram our trollies into her and kick her stick out from under her - she won't care.
Then there was the car park. Unfortunately, I haven't been able to get a lovely shiny Blue Badge yet so parking in disabled spaces is a no go and some idiot with no children whatsoever in his flashy sports car had just taken up the last parent/child place so my husband had to park quite a fair distance from the shop entrance and carry our 15 month old son to the trolley park whilst I limp along with my stick. Getting into the supermarket was fine, getting out of it was not. Trolley loaded, my wonderful hubby speeded back to the car to load it up then come back for me but stupidly I thought, what the hell, I'll just walk slowly to the car. Obviously people couldn't see me walking slowly, with a silver/grey aluminium walking stick, blue jeans and white, yes WHITE tee-shirt (its not like you could miss me) so this enabled one irate driver to almost turn into me whilst he was looking the other way. Here's a tip people - generally don't turn into a corner whilst looking in the opposite direction, stop first and asses BOTH sides. (and this is coming from someone who isn't allowed to drive anymore)
Then to top it all off, here I was again, after several deep breaths, walking, keeping to one side in a one-way lane, making sure there were no cars reversing out of their parking bays when another idiot decided to turn in the lane heading in the wrong direction, swerve to an empty space and then reverse out of it again literally inches from where I was walking and he looked annoyed that I was walking so close and he had to wait until I had passed him for him to continue, and believe me that took a while. If I could walk faster I would but I can't and its people like these today that just ignore the fact that any joe blogs can be ill and not look it.
For once throughout my illness, today I felt like an inconvienience and I hated it. I'm a nice person, worthy of people's attention and respect that is shown to any disabled person because even if we don't have the guide dog beside us or the use of a wheel chair (I know that a lot of ME sufferers do have a chair and I respect that fact), like it or not CFS/ME sufferers to a point are disabled. We have a dibilitating illness that affects our daily lives even if its just from an hour of sever fatigue to weeks not being able to move, its dibilitating, and its frustrating and I applaud all of us, whether you are bedbound, wheelchair bound, or housebound, or even have a minor degree of suffering, I applaud us all for keeping strong, not letting our illness take the simple things in life such as food shopping, away from us.
Stay strong Spoonies - (hehe, I love that term).
Tuesday, 26 April 2011
Thank you
Ok, so I've been ranting on a bit about how crap things are right now with having ME but there are positives in my life for which I'm extremely grateful for.
Firstly my husband. Without him I wouldn't be the person I am now. He saved me from being alone and saved me from being a large brick wall with no doors or windows and no way of getting through. He is kind, considerate, handsome (bloody gorgeous in fact), loving, generous, he is my husband, best friend and lover all thrown into one 6'6" package. I don't know what I would do without him, especially when the days are so bad with the pain and the tiredness. He is my rock and I am so lucky to have found him.
Then there are my children, three little scamps that if it weren't for them I might have given up by now. They can be trying at times but they know that their mummy isn't well and I'm so proud of the way they are dealing with this situation. They are strong, they have learn't to adapt and although deep down they are disappointed that Mummy isn't able to play games or go for a bike ride with them or just generally spent activity time with them, they don't show it. I love them dearly and wouldn't change them for the world.
Then there are my friends and family that have shown so much support I applaud them for standing by what I feel is a high maintenance, low self-esteem person that feels incompetent at everything she does.
Its a combination of all these people above that help me get through the day and help me deal with having this crappy illness, so its to them I thank.
Thank you, with all my heart, soul and rattly bones xxxxx
Saturday, 23 April 2011
When Brain and Body don't get along
Sorry I haven't blogged for a few days, had it rough. My brain and my body had a severe falling out and now I'm stuck in the middle of what feels like World War Three!
It started on a Thursday, woke up feeling fine. Was chuffed that the sun was out, it wasn't too hot and there was a nice breeze. Decided me and the family should stock up our food cupboards so off we go. Shopping went fine, we usually go round slowly anyway so I don't tire quickly, got everything we needed and came home. That's when disaster struck! My brain wanted to carry on, have a nice BBQ with the family and enjoy the rest of the day. My body had other ideas. At this point they were just quibbling, getting at each other, nothing major and I could handle it. I came to a compromise. I would enjoy the family BBQ but not do anything strenuous. For the time being things were amicable and peace reigned.
Friday - the war began. My brain, still ever the enthusiast wanted to do all sorts but my body was having none of it. In fact, it fought back with such a ferocity that I had no choice to pitch myself on the sofa for the day. I couldn't even drink a glass of juice without the shakes and trembles and after the sip was make, I was knackered! My body kept throwing pain after pain after pain at me, in my legs, my feet, my shoulders, my fingers, my wrists, anywhere where bone met bone and muscle met muscle. So my brain decided to retaliate by throwing mixed messages at my body. The twitches began, the restlessness and the ultimate fatigue. It was like they were proving who had the worst they could throw at me. Also, my brain decided that intelligence wasn't on the menu either so Brain Fog set in. Once minute you are are com pus mentas and the next you can't even remember what happened three seconds ago, forget what you are talking about mid-sentence and start getting all your words mixed up. It was Hell, not going to lie, it was worse than Hell. Having to keep standing up to keep the circulation going and then sitting down zapped any amount of energy I had out of me. I was done. I gave in and a truce was established.
War or no war, yesterday was a nightmare, a nightmare that I know will repeat itself again and again and again. At least brain and body are letting me do the odd thing today like the blog but as always, enjoying too much of a good thing and I will be punished. Fingers hurt, typing slowing down, need to rest.
It started on a Thursday, woke up feeling fine. Was chuffed that the sun was out, it wasn't too hot and there was a nice breeze. Decided me and the family should stock up our food cupboards so off we go. Shopping went fine, we usually go round slowly anyway so I don't tire quickly, got everything we needed and came home. That's when disaster struck! My brain wanted to carry on, have a nice BBQ with the family and enjoy the rest of the day. My body had other ideas. At this point they were just quibbling, getting at each other, nothing major and I could handle it. I came to a compromise. I would enjoy the family BBQ but not do anything strenuous. For the time being things were amicable and peace reigned.
Friday - the war began. My brain, still ever the enthusiast wanted to do all sorts but my body was having none of it. In fact, it fought back with such a ferocity that I had no choice to pitch myself on the sofa for the day. I couldn't even drink a glass of juice without the shakes and trembles and after the sip was make, I was knackered! My body kept throwing pain after pain after pain at me, in my legs, my feet, my shoulders, my fingers, my wrists, anywhere where bone met bone and muscle met muscle. So my brain decided to retaliate by throwing mixed messages at my body. The twitches began, the restlessness and the ultimate fatigue. It was like they were proving who had the worst they could throw at me. Also, my brain decided that intelligence wasn't on the menu either so Brain Fog set in. Once minute you are are com pus mentas and the next you can't even remember what happened three seconds ago, forget what you are talking about mid-sentence and start getting all your words mixed up. It was Hell, not going to lie, it was worse than Hell. Having to keep standing up to keep the circulation going and then sitting down zapped any amount of energy I had out of me. I was done. I gave in and a truce was established.
War or no war, yesterday was a nightmare, a nightmare that I know will repeat itself again and again and again. At least brain and body are letting me do the odd thing today like the blog but as always, enjoying too much of a good thing and I will be punished. Fingers hurt, typing slowing down, need to rest.
Wednesday, 20 April 2011
Weight Loss - yeah right!
Apologies if this offends.......
I read a glossy magazine today and I wish I hadn't. The amount of pages dedicated to losing weight, being the perfect size 8 and celebrities saying they hate their bodies and their size really gets to me.
Firstly, boo hoo! I know that's harsh but I'm really fed up with this stereotype that all women should be thin and lean and not a wrinkle or crinkle in sight. Being pressured into selecting a diet that works, which lets face it, when it comes down to it, no real food is involved! Then there's the exercise regime. Please! Who has enough time during the day to run 80 odd miles a blummin' day?! I certainly don't besides, I don't have the energy to put the trainers on! Don't get me wrong, I'm not against all this per say, in fact if truth be told, I'm rather jealous of the size 8 figure and the perfect skin and gorgeous clothes that don't show the lumps and bumps but in the real world CFS/ME sufferers don't have this type of luxury.
Another issue that's got me a little riled up is Victoria Beckham. Don't get me wrong, I am pleased for her that she's finally getting the little girl she's always wanted and I'm only going by what the tabloids and magazines are saying but the latest crisis in her life is that she says she looks hideous being pregnant, (worried that Kate Middleton is going to outshine her at the Royal Wedding!!!!!) and she's worried she's not going to lose the baby weight after the bambino is born. This is a regular thing with pregnant celebs but its also a concern for us 'normal' women but in my case, (and I'm sure I'm not the only one here) I became ill after having my son.
I put on five stone during my pregnancy and shortly after my son was born I was diagnosed. Therefore, the exercise and loosing the baby weight isn't an option! I feel and look hideous the size I am, I've never been this big and its killing me being trapped in my body at the moment. Not only is it failing, its expanding. I've tried slimming tablets, cutting out carbs and cutting back on chocolate and calorie rich foods but I'm still eating food and not exercising at the end of the day. I'm putting the calories on and not burning them off. My son is now 15 months old and honestly, I still look six months pregnant. In fact, a woman commented on me having another baby so soon after having my son!
So please VB and other pregnant celebs worried about shredding the baby weight, please stop and think about the people who have been blessed with their babies but are tormented being trapped in bodies that don't work properly and are getting too heavy to carry around. In fact, the heavier I am, the tireder I become.
I want my body back.
I read a glossy magazine today and I wish I hadn't. The amount of pages dedicated to losing weight, being the perfect size 8 and celebrities saying they hate their bodies and their size really gets to me.
Firstly, boo hoo! I know that's harsh but I'm really fed up with this stereotype that all women should be thin and lean and not a wrinkle or crinkle in sight. Being pressured into selecting a diet that works, which lets face it, when it comes down to it, no real food is involved! Then there's the exercise regime. Please! Who has enough time during the day to run 80 odd miles a blummin' day?! I certainly don't besides, I don't have the energy to put the trainers on! Don't get me wrong, I'm not against all this per say, in fact if truth be told, I'm rather jealous of the size 8 figure and the perfect skin and gorgeous clothes that don't show the lumps and bumps but in the real world CFS/ME sufferers don't have this type of luxury.
Another issue that's got me a little riled up is Victoria Beckham. Don't get me wrong, I am pleased for her that she's finally getting the little girl she's always wanted and I'm only going by what the tabloids and magazines are saying but the latest crisis in her life is that she says she looks hideous being pregnant, (worried that Kate Middleton is going to outshine her at the Royal Wedding!!!!!) and she's worried she's not going to lose the baby weight after the bambino is born. This is a regular thing with pregnant celebs but its also a concern for us 'normal' women but in my case, (and I'm sure I'm not the only one here) I became ill after having my son.
I put on five stone during my pregnancy and shortly after my son was born I was diagnosed. Therefore, the exercise and loosing the baby weight isn't an option! I feel and look hideous the size I am, I've never been this big and its killing me being trapped in my body at the moment. Not only is it failing, its expanding. I've tried slimming tablets, cutting out carbs and cutting back on chocolate and calorie rich foods but I'm still eating food and not exercising at the end of the day. I'm putting the calories on and not burning them off. My son is now 15 months old and honestly, I still look six months pregnant. In fact, a woman commented on me having another baby so soon after having my son!
So please VB and other pregnant celebs worried about shredding the baby weight, please stop and think about the people who have been blessed with their babies but are tormented being trapped in bodies that don't work properly and are getting too heavy to carry around. In fact, the heavier I am, the tireder I become.
I want my body back.
Tuesday, 19 April 2011
There is only so much rest one can take!
OK, I don't want to sound ungrateful here or try to make out I'm feeling sorry for myself but I've always been an active person. I've always enjoyed working, enjoying outdoor sports such as rollerblading and cycling with my children and have been known to do the odd walk or two. I've danced in my living room to no end whilst doing the chores and even when not doing chores, I've had the curtains closed and the music up loud and danced until my heart's content. Now however, those things are impossible. The very thought of getting my blades on right now fills me with dread as I know I will be suffering for it afterwards, besides, I don't have the energy to put them on in the first place! But when you are placed in a situation where rest is a big part of surviving everyday it can get a little tiresome.
There have been days in the past where I have thought to myself, "god, I would love a day to rest, put my feet up, read a little, watch trashy movies on TV and not even get dressed". Well, in the present, that is exactly what my days are like. Day in and day out. When you've gone from being really energetic to doing practically nothing it can take its toll. I may not speak for everyone but I'm getting tired of the same four walls in my living room, getting very fed up with the state of the house and even, (hate to admit this to myself) feel very jealous of my children for being able to go out into the sunshine and ride their bikes, play dizzy dinosaurs in the garden and go out and walk the dogs.
Don't get me wrong, I've been out. Done the odd bit of shopping and walked a little but I've had my trusty walking stick with me to lean on and the entire family asking me constantly if I'm ok, can I manage. I know they love me and want to take care of me but I know my limits and if I wasn't ok, I'd tell them. Believe me, its easier to tell them then to hide it, you'll only make it worse for yourself.
But when I get home, its straight back onto the sofa for me, in my comfy sweats, a book by my side and the TV remote in my hand. When I'm able to have complete peace and quiet (not easy with a 1year old, 5 year old and 11 year old) to completely rest I end up kicking myself thinking about all the things that need doing. The TV needs dusting or the dishes need putting into the dishwasher. If I'm completely honest, I'm not sure if its the actual resting that drives me insane or the thinking of what needs doing while I'm resting that's driving me to the brink of screaming, knowing that if I do those odd little jobs I'll feel worse physically. So, the big question is - do I feel worse physically and do the jobs and feel guilty for not resting or do I ignore the jobs, rest and feel worse mentally and feel guilty for not doing the jobs?
I just can't decide :-(
There have been days in the past where I have thought to myself, "god, I would love a day to rest, put my feet up, read a little, watch trashy movies on TV and not even get dressed". Well, in the present, that is exactly what my days are like. Day in and day out. When you've gone from being really energetic to doing practically nothing it can take its toll. I may not speak for everyone but I'm getting tired of the same four walls in my living room, getting very fed up with the state of the house and even, (hate to admit this to myself) feel very jealous of my children for being able to go out into the sunshine and ride their bikes, play dizzy dinosaurs in the garden and go out and walk the dogs.
Don't get me wrong, I've been out. Done the odd bit of shopping and walked a little but I've had my trusty walking stick with me to lean on and the entire family asking me constantly if I'm ok, can I manage. I know they love me and want to take care of me but I know my limits and if I wasn't ok, I'd tell them. Believe me, its easier to tell them then to hide it, you'll only make it worse for yourself.
But when I get home, its straight back onto the sofa for me, in my comfy sweats, a book by my side and the TV remote in my hand. When I'm able to have complete peace and quiet (not easy with a 1year old, 5 year old and 11 year old) to completely rest I end up kicking myself thinking about all the things that need doing. The TV needs dusting or the dishes need putting into the dishwasher. If I'm completely honest, I'm not sure if its the actual resting that drives me insane or the thinking of what needs doing while I'm resting that's driving me to the brink of screaming, knowing that if I do those odd little jobs I'll feel worse physically. So, the big question is - do I feel worse physically and do the jobs and feel guilty for not resting or do I ignore the jobs, rest and feel worse mentally and feel guilty for not doing the jobs?
I just can't decide :-(
Sunday, 17 April 2011
The Weather
Ok, last post I got a little bit worked up, which doesn't help my condition so today I'm going to try and keep calm afterall I'm British and as the saying goes - "We carry on". Not sure who came up with that one but I remember an episode (a very good episode infact) of Doctor Who that that saying was used over an over again. I suppose it does make sense, we have in history always got on with and won over every crisis we've faced. (Lets just hope that the current crisis of which is named The Government, can be won over - not too sure at this point considering the state of my bank account but positive thoughts all round.)
Ok, lets get back to the topic at hand - I do tend to go off on a tangent but stay with me, I get back too it eventually. Here I go again.....
The weather. It is said that the weather can affect how we feel on a daily basis and I have to say I agree. When the weather is at its worst (typical British weather), I feel bad, I don't want to make an effort and the cold seems to affect my illness as the pains are worse. When the weather is good, I seem to be able to make the effort, I feel better and I do more, that is until I've pushed myself to the limit, not rested inbetween activities and I'm right back to where I started from - either bedbound or sofa bound, walking stick by my side, painkillers on hand and a blanket of pure exhaustion laying over me. Why do I do it? Why do I push myself too hard when the sun is shining? I guess its because I don't want to face the summer having to watch my children play while I'm laid up suffering. But that's what ME/CFS sufferers face every day. Each day, they don't know how they are going to feel when they wake up and once they are awake, they either feel ok, not brilliant but ok or they feel horrendous.
A good day is when you can walk and do simple tasks but still don't feel human. I want to be human. I want to spend time with my kids without them having to sit there watching me suffer. I don't want to miss out on their lives but I am. Having to plan ahead your activites such as a family day out - rest the day before - rest the day after and possibly the day after that depending on the activity you enjoyed with your family, but don't forget, you will be punished for enjoying your day, you will be in pain, you won't be able to walk and you will be so tired that all you want to do is sleep until you feel like you again. I can't remember what feeling like me is like, its been that long. I guess haveing ME/CFS is me now and as I'm British, I'll carry on.
Ok, lets get back to the topic at hand - I do tend to go off on a tangent but stay with me, I get back too it eventually. Here I go again.....
The weather. It is said that the weather can affect how we feel on a daily basis and I have to say I agree. When the weather is at its worst (typical British weather), I feel bad, I don't want to make an effort and the cold seems to affect my illness as the pains are worse. When the weather is good, I seem to be able to make the effort, I feel better and I do more, that is until I've pushed myself to the limit, not rested inbetween activities and I'm right back to where I started from - either bedbound or sofa bound, walking stick by my side, painkillers on hand and a blanket of pure exhaustion laying over me. Why do I do it? Why do I push myself too hard when the sun is shining? I guess its because I don't want to face the summer having to watch my children play while I'm laid up suffering. But that's what ME/CFS sufferers face every day. Each day, they don't know how they are going to feel when they wake up and once they are awake, they either feel ok, not brilliant but ok or they feel horrendous.
A good day is when you can walk and do simple tasks but still don't feel human. I want to be human. I want to spend time with my kids without them having to sit there watching me suffer. I don't want to miss out on their lives but I am. Having to plan ahead your activites such as a family day out - rest the day before - rest the day after and possibly the day after that depending on the activity you enjoyed with your family, but don't forget, you will be punished for enjoying your day, you will be in pain, you won't be able to walk and you will be so tired that all you want to do is sleep until you feel like you again. I can't remember what feeling like me is like, its been that long. I guess haveing ME/CFS is me now and as I'm British, I'll carry on.
Saturday, 16 April 2011
I'm Not Lazy - I Have ME
No-one can see the future, despite all these celebrity fortune tellers and psychics listed in magazines and leaflets, no-one can see how your future will pan out. I wish they could, they could have told me I was going to be ill instead of having to find out after enormous amounts of testing and disbelief and the accusations that I was making my symptoms up, the discrimination from my peers and the self-loathing I had for myself for feeling the way I did. After all that time, it was nice to finally have the official diagnosis and understanding from a specialist that I have M.E.
Myalgic Encephalopathy or as it is more commonly known as Chronic Fatigue Syndrome, is a REAL illness with REAL symptoms, NOT something people say they have to get out of work or make excuses for being lazy. Those who do use it as an excuse should walk a day in the shoes of a real sufferer and find out for themselves how painful, disorientating, debilitating and what a real struggle to get through each day it is.
I have decided to use this blog (and endeavour to keep it up) as a way of releasing some of the stress that gets all pent up inside when I'm having a bad day so if you are really into reading nonsense then this is the right stuff for you, although some may not be pretty and some content may not be suitable for fragile readers as I have been known to swear, particularly when it comes to my husband's employers - HM FORCES. Don't get me wrong, I am very proud of what my husband does and very proud to be associated with the sacrifices and dedication each soldier has but being married to a soldier is hard work. Army wives are known as "extensions to the house" and "soldier's baggage" and do not seem to have any rights. So when my husband told his boss that I was ill and gave him directly my specialists report and description of my illness, it was dismissed and my husband got told it was all in my head. AARRRGGGHHHH It Is Not In My Head!!!!!!!
Should go, got myself all worked up, back soon.....
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