Wednesday, 12 May 2010

For ME

Happy International ME/CFS and Fibromyalgia Awareness Day everyone!!

Today, 12 May, is a day for raising awareness of ME / CFS and Fibromyalgia internationally. (Ok - so it's clearly not the 12th any more but that is when I started writing this piece.)

In honour of this I would like to make the subject of my post today me. Or rather ME.


This blog was created to chronicle my bleeding condition - von Willebrand's disorder. This is a rare disorder which means my blood doesn't clot very well. It is a little like haemophilia and has caused me to have an interesting a blood soaked life, since diagnosis at 6 months old.

I'm now 36 and whilst I am a happy little bleeder generally - who finds handling a long term chronic disorder, within my capabilities - the last few years have been a bit tougher. (If you would like to find out more about the von Willies please do peruse my previous posts - preferably with a cup of tea and slice of summat to keep your energy up.)

Something I have blogged less about is my experience of having CFS or ME.

Why is that?

I know my von Willies well. I was born with it. It is who I am. I am a bleeder. I am able to live in that knowledge and with the challenges that presents in a fairly confident, capable and good humoured way.

The von Willebrand's is treated with clotting factors. Which are made from blood products. From these blood products I contracted Hepatitis C way back when they were shooting clotting factor into my little girl's veins.

The Hepatitis C stuck with me, infecting my blood and messing with my liver, until I had the second of two lots of treatment, which managed to eradicate the virus from my blood.

Good news right?

But wait...

I really struggled with the treatment - Interferon and then Pegalated Interferon and Ribavirin.
And I mean really struggled.
It wiped me out.
Beat me up.
Wrang me out.
Shook me up.
Drained me out.
Chewed me up.
And spat me out.
It felt like being in a washing machine for 12 months.

Ever since the second lot of treatment in 2003 I have had recurring CFS or ME.

I still felt I was on the treatment six months later, 12 months later, 2 years later and still now 7 years later. Unable to work. Unable to live the way I used to. Existing. Waiting.

Don't get me wrong I have had periods of being well - being able to work, to live a full life, to fit everything in I wanted to and more....

However the reality now is not so good. My natural outlook is a sunny one. I see my CFS as a grey cloud that contains me and is not always easy to shine through.

The tricky thing is that to the untrained eye I look well. You look at me and don't see the cloud. Or the fog or the mist that clogs up my mind and body.

I used to find it hard to acknowledge the CFS. My mum once gave me a leaflet on ME and said - this sounds much like what you've got. Oh no, said I, that's not me - I'm just getting over the Hep C treatment. I'll be fine in a bit.

Even now if people ask me how I am - I'm fine! Or if not fine - I'm a bit tired.

A bit tired!! Understatement city :)

It is difficult to write how hard things can be. Equally it is difficult to talk about how hard things can be.

That is a problem.

How can I expect people who do not have, have never had ME or CFS to understand what it is like if I don't let it out.

You may be looking at the picture above and saying to yourself - she looks right enough. That is understandable.

If you see me looking well - which I do when I'm in public, most of the time;
or see me getting to the supermarket - which I do some of the time;
or if you have a conversation with me and I'm upbeat - which I try damn hard to be all of the time;
you cannot be expected to understand the reality.

I have tried to be a bit more explicit, but when I mention how exhausted I am - you might say, oh yes I'm tired too.
When I say it's hard to get things done - you might think, oh but you're lucky you don't work, you have plenty of time.
When I explain how hard it is to sleep - you might suggest, perhaps if you did more in the day you'd be more tired and sleep better?
When I say how much my body aches - you might sympathise, maybe if you got out more you would be fitter and be less stiff?

Often I don't have the energy to respond.

To argue that my exhaustion is so deep it is like a coat of lead that I wear 24 hours a day - that prevents me getting out of bed, that means I hurt to wash my hair and hang out my washing because my arms have to be held up, that means I pant after going up the stairs and need a rest after washing, then after dressing, then after eating my breakfast...

To explain that it is hard to get things done because my brain doesn't work properly any more. You know how you feel when you're hung over? Like your head is full of wool and your body is poisoned? That is my normal state. I forget things that used to be second nature. I struggle to make a cup of tea if you're talking to me, to hold a conversation without losing my thread, to write a blog without wanting to smash the computer because I keep getting words wrong, to run a bath without putting the wrong tap on and flooding the house, to put toothpaste on the brush and not Veet. I can't expect you to understand that some days I struggle to fit in getting up and dressed and doing some tidying and making the tea. Let alone cleaning and ironing and paying the bills and having people drop in to see me. The washing machine beep sends me demented. Running out of cat food is a constant worry because it means having to go out to get some.

To elaborate that I can't sleep because I'm so tired it hurts. That my joints ache and my muscles twitch and I can't be still for longer than a couple of minutes without twisting and turning and writhing trying to find a comfortable spot. That I feel things crawling on me - on my arm, then on my foot, then on my back, then my leg, then my face. There's nothing there, it's just a symptom of the CFS, Crawling Effing Sods. That if I do get to sleep I often wake in the small hours and then it starts all over again - the pain and the aching and the crawling and then the mind chimes in telling me that I need to sleep, I need to sleep, I need to sleeeeeeeeeep!!

To tell you that the aches and pains are such that I can't sit still for more than a few minutes without stretching and flexing my legs, arms, fingers. Next time you have the flu and you feel so sore and drained you can't move out of bed or off the sofa - that it how it feels on a bad day with CFS. It feels like my bones are rotting and my muscles are aching and twitching in an endeavour to get out of this body.


Is it better for me to acknowledge the CFS? Does it help to let it out? Or does that just remind me how much fun it isn't??

I know fighting the condition doesn't work - that the energy used constantly battling to overcome the lack of energy and limitations of your body aggravates the condition exponentially.

So do I need to accept ME in order to get better? Embrace my little grey cloud and let it hug me back. Take care of myself rather than push myself to the limit? Listen to my body rather than shout at it? Allow my body to recuperate rather than expect it to continue at an unsustainable pace? Give my mind space to rest and restore rather than shower it with anxiety and pressure and stress?

Love and cherish not berate and frustrate.

Worth a try, right?

7 comments:

Maya Magdalena said...

Wonderfully written post! It made me cry; I recognise so much of it from my own daily life. Thank you so much. Really, thank you. ♥

greenwords said...

Thanks for this post and for sharing your experience.

Mcleod said...

Hi Ros
Most of your symptoms I too have, But perhaps not as bad. I'm a T3 vWD who bleeds a lot (Hep C/HIV) I have not had a proper assessment for ME, A blood test was supposed to be coming along for it.

Some of my symptoms were alleviated, when after years of Iron/feritin Deficiency, which at its height meant that I was receiving 4 units a blood every 3 weeks. After years of that it was suggested that I be given Iron infusions, which went well and I could go 3-4 months at a time between infusions. That stopped as I found that I could again tolerate oral iron, but my levels were never high enough to considered at all normal. Recently I had a course of four Iron infusions, which put my levels way up. Now I know you bleed a lot and anaemia must at times be an issue, do not under estimate how it can make you feel.When you have low feritin levels, you can't sleep, you get restless legs a fidgety in bed, it can affect you mood, concentration energy levels and in my case I bleed more, when i told the doctors this some just think im daft, but others that have known me for along time, believe me (like some doctors thick 8Y is as good as Haemate P and Optivate is better)just because your symptoms are not in the text books the cure can often be left field.
http://en.wikipedia.org/wiki/Ferritin

Another thing you don't seem to be on prophylaxis full time, am i correct? If not you should be, you need not to bleed at all every time you bleed, you use what Level you have up and your platelets, so you bleed more and more. For years i was on demand only, having tried many times to sustain a prophylaxis regime but always failing. I suffered the 24 hour gum bleeds that would start with the gum around 1 tooth bleeding but at the end of 24 hours it would be 4 teeth, why o why did I put up with it? So get you Ferritin levels checked if they are under 29 which is the lowest normal reading ask for an Iron infusion. Even if your HB is ok. Your MCV can affect your bleeding,and low Iron will affect your MCV, doctors don't get that, but from experienced it does and i even managed to convince a couple of centre directors who were vWD experts and said there is a lot about vWD that is not understood and that it is a far more individual diease compared to Haem A. Many doctors go a funny colour because they think Iron Infusions are dangerous, well anaphylactic shock can occur, but all the doctor has to do is a little research to find out that oncology/haematology departments do them all the time.

As for gum bleeds, a few years a go i discovered Philips Sonicare, amazingly, teeth never been so clean and hardly ever a bleeding gum.

Yeah and you should be on 3 times a week prophylaxis.

Hope you can make sense of all that.

Ros said...

Hi all

Maya - I'm so sorry I made you cry, but I do know how powerful it can be finding someone who truly understands what it is like living with CFS. Thank you for your comment - it is reassuring knowing I'm not the only one. I do hope that your condition improves over time.

Greenwords - thanks for your comment too. After reading your ME Awareness Day post I took the liberty of sharing your blog with a friend of mine because I found it such a useful source of information regarding ME and CFS. I learned a lot from reading that one post of yours and I will be back for more:)

Mcleod / Grant - great to hear from you again. And you have given me some fascinating information and shared lots about yourself which I really appreciate.

I am trying to get my head around everything you've told me. So scuse me if I get anything wrong. I was at my Haemophilia Centre on Friday and I spoke to them about Ferritin and restless legs. They looked it up on the net and couldn't find any info then and there - I didn't say try Wikipedia because I knew they wouldn't take me seriously - however they are looking further into it, as will I. This definitely sounds like it might be very helpful for me as my symptoms are very similar to restless legs and I have had very low Ferritin levels before. Leave that one with me.

I will be investing in a Sonicare toothbrush tout suite! If I do take prophylactic treatment it has to be twice daily to have any effect and then I have no gum bleeds and boy is that good!

You say that you have prophylaxis 3 times a week right? Does that rule out bleeding or just make it more manageable when it does occur? I ask because that doesn't strike me as nearly enough given a half life for vWf of 6 hours in my case. However another vWd friend is on the same regime.

Sorry to be a thicko but what is my MCV?? It sounds important.

You sound like you have had a crazy time of it, Grant, but you also have an admirable grasp of the condition. I totally agree that vWd behaves very differently individual to individual and there is a massive lack of understanding in the medical profession. I'm trying my best to become more of an expert in my own care because I think we must, but with my tired brain it is not always easy.

Have you thought about writing your own blog / book - sounds like you've got the material for it!

Thank you so much for all you've told me so far and I hope you don't mind my continuing to pick your brain.

Love Ros xxx

Mcleod said...

Hi Ros

I'll start with prophylaxis, yes the half life is 6 hours, but the levels you (or anyone needs)to stay symptom free of bleeding disorder during normal day to day life is only 5-10% (using 50% as normal)so if you dose to 50iu per kg after 6 hours you are down to 25iu, it drops norm but being vWD we get secondary rises so it peaks and troughs. But takes quite a time to fall to ""normal"". There for 3 time a week or every other day is OK. When we are bleeding yes we do need twice a day because the F8 and RiCof is being used, so the secondary rise is less significant. I find that it pretty much makes me normal, in that i bleed a bit but a gum bleed only lasts 20 mins even when i am due another treatment, and i don't get any other muscle or joint bleeds. You see the less you bleed, the less you bleed if you get what i mean.
You do know that we make F8 as well as the next man don't you! its the RiCof we don't make. So when i say 50iu per Kg I mean 50iu of RiCof.

When you bleed during your period, do you worry about using too much treatment? Don't because you are using it up. for a sort period of time i was being given 23000 units of Haemate P a day. Yes 23000. Its a long story.

MCV stands for Mean Corpuscular Volume, basically its the size of you Red Cells. In the past when i was bleeding all the time some doctors though i was nuts, when i told them that i bleed more when my MCV was low. It was low because i was iron Deficient(Ferritin)After having Iron i bleed less, the cycle repeated over and over which kind of proved the point to me. My theory can be summed up in this basic analogy, the smaller the ball the faster it falls through the funnel. (hope that makes sense LOL) My blood seems less sticky when I'm anaemic and that's about as basic as clot gets "sticky blood"

Gum bleeds, sonicares are fantastic. The trouble is it is healthy to brush your teeth till your gums bleed, unfortunately we don't stop, so prophylaxis is best option. But here a couple of other tips. I don't know about you but most of my gum bleeds happen at night. I have two theroies, 1 we use what little F8 we have during the day so bleed more at night, 2 at night our mouths get dry!. So try and clean you teeth a couple of hours before you go to bed, if they bleed, try suger free gum (laugh if you like i know its a funny one, but it works/ed for me and you did say once your gums stopped bleeding after your cornflakes)chewing seems to help. Also Tranexamic acid on a piece of cotton wool directly to the gum. I've even resorted to just chewing a tablet and packing it around a gum and covering it with cotton wool.
Oh medium never soft brushes as the soft bristles get between gum and tooth too easy, and replace the brush as soon as the bristles bend out. But i say sonicare, you have to get used to the feeling at first.

Ros said...

Grant

I feel like I've left your very informative comment hanging for ages without replying. Sorry bout that, it's rude of me.

I am fascinated by what you are telling me and will investigate further. How have you achieved your level of knowledge - is it purely from years of patient experience?? My problem is that the CFS often leaves me unable to read complex information in such a way as to take it in. Sounds ridiculous but there it is. So I keep coming back and re-reading your info in order to understand it.

I have had some progress with Ferritin and half life levels which I am intending to blog about very soon.

I'm really not sure my doc will be up for prophylaxis 3 / week but then if that reduces the time frames during which I would need twice daily treatment - I can but ask him!

What I would like is a national specification for the level of treatment a type 3 von Willie should expect, but the diversity of the condition within each patient may negate this possibility?

I have time for a long story if you do wish to go into why you needed 23000iu of factor a day - I'm very interested.

Thanks again,
Ros x

Taz said...

Thank you Ros. It is as though I had written what you wrote - everything. The symptoms, the grey cloud, the pushing and determination to be better. And the denial.

I have given up telling anyone I have ME. I just hide away when the symptoms are bad, sometimes I tell friends I have had the flu, or a headache, or something that they can understand. Its alienating, but easier than the attempts at commiseration.

The worst are suggestions that its a psychological state - that I could somehow think my way out of it. They tell me to learn to say 'no', or to calm my mind, or to lose my 'inner critic'. So patronizing, and so unhelpful. Yes, stress management helps, and pacing, and not pushing too hard. But that helps with high blood pressure too.

I hope you feel better very soon, its a terrible illness. It is wonderful to know there are people out there who understand.