The Silent Ilness

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

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!

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.

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.

This is another notch on the bedpost as it were for ME winning and another setback for me. But this war is not over yet, I still have things to look forward to, my new house, a fresh start for me and my family and fingers crossed, a better way of life for me, no stress, no hassle, phone silence. :-)

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!

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.

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 :-(