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 :-(

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!

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......

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!!!!