M.E./CFS Awareness Day 2012

Hi everyone!

As some of you may know, I have M.E./CFS (Myalgic Encephalopathy/ Chronic Fatigue Syndrome)and so, to raise awareness of the illness, I have asked people to send me some questions about it so I can explain a bit more about it and tell you how it affects me.

Here is a good link to explain a bit more about the symptoms of the illness.

and here is an excellent article about M.E./CFS myths.

The first set of questions were sent to me by Mark Arnell.

What time of the day does fatigue set in?

To be honest, I always feel the fatigue but it tends to be worse around mid-afternoon. It does however depend on how much sleep I have had and whether my sleep pattern is backwards or not. The fatigue is not ‘just tiredness‘. It is extreme, overwhelming and debilitating.

How long does the fatigue last?

As I said, the fatigue is a constant. It never really goes away. Some days are better than others of course but even on those days I still need frequent rest breaks to make it through.

What signs do you get before fatigue?

It’s hard to explain but  I feel very unwell. When I have overdone thing or am crashing I get a sore throat, feel dizzy and feel generally ill and run down.

How best do you try to overcome it?

Pacing is one of the best things I have found and am still learning to do. Plan rest breaks and naps throughout the day, do tasks in small chunks with rest in between, if I have to do something big (for example, travelling) then make sure I have plenty of rest before and factor in rest and recovery time afterwards. It’s not something you can fight against, it is best to go with it and try to implement as much damage control as possible.

Do you find the weather affects fatigue?

Yes, I do. Very hot weather is draining. Very cold weather makes my muscles and joints ache a lot which in turn drains my energy. I do find my health is slightly better in spring/summer months when the days are lighter.

Do you suffer from poor sleep patterns as a result of fatigue?

Yes, my sleep pattern has been a problem since I first got ill. I need to sleep a lot to be able to make it through the day. I often have to have naps during the day as it gets to a point where I just cannot stay awake any longer. My sleep pattern is often backwards; so I am awake all night and sleep through the day. It seems no sooner have I turned my sleep around the right way that it flips again and I have to start all over. This is a common symptom of M.E./CFS.

My wrist band

Click here to buy wristbands to raise awareness and support the ‘Invest In ME’ charity

The next questions are from Howard Avis.

1. When did you first become aware that you were ill? Was it a sudden or gradual realisation?

At the time I was going through a lot of stress as I was moving house and I got ‘flu. It really knocked me for six and I had such a sore throat I couldn’t speak, I could hardly get out of bed and I ached all over. I had two weeks off of work and thought I’d be better by then but I wasn’t. My GP gave me another sick note, and another and another and I still got no better…and here I am today!

2. How long did it take for you to get an accurate diagnosis?

I was very lucky that my GP was sympathetic to what was going on. I had lots of tests and saw a consultant at the hospital (he was less than useful but we shall ignore him cos he’s not lovely). After six months of being ill, I was diagnosed with CFS (Chronic Fatigue Syndrome).

3. How did you feel when you learned the news that you were ill?

Well, I knew I was ill but to actually have a name to put to that illness was mixed for me. I was relieved that I finally had a diagnosis but sad also because it meant that it wasn’t just ‘flu that I could get over ‘easily’.

4. What were the most important changes you had to make in your life when you became ill?

There were so many changes. I could no longer work as I was too unwell. I could hardly manage to do anything at all but sleep. I would try my hardest to do things around the house or to go out to the shops just to be normal but it ended up flattening me and I was in a ‘boom and bust‘ cycle of pushing myself then ending up worse. It took a long time for me to get to grips with that and the pacing I talked about earlier. I can no longer do things on a whim as everything has to be planned.

I also had to learn to rest properly. I’m sure most people think that sitting in front of the TV watching mindless programs is rest but actually, watching TV is quite a strenuous activity for me…reading a book is the same…mental activities affect me just as much as physical ones. So, rest for me is sitting or laying quietly, maybe listening to soft music or just in silence. It sounds boring. In fact, M.E./CFS is pretty boring because you spend great lengths of time just laying in bed or sat quietly as you aren’t able to do anything else. That’s why I took up various crafts as it keeps me busy enough to not be bored but isn’t too taxing for me and gives me a sense of accomplishment when I make things.

5. How did other people react to you when you became ill?

Basically, everyone were pretty upset. There was a lot of reading up on the illness and me trying to explain how I felt. I have been very lucky compared to a lot of people because my family have always been very supportive. Of course there are times when they don’t understand what is going on but they try to understand as best they can and have been brilliant on the whole 🙂

6. On really bad days what keeps you going?

I have learned to appreciate the little things. Listening to rain on the windows, looking at flowers and pretty things, fresh bed linen, eating a cupcake all the kinds of things I put here on my blog. In fact, I started this blog of loveliness so that I would always have a place to go to see something cheerful. My friends keep me going too…everyone on the brainfog forum (for M.E./CFS sufferers and carers)…my family and of course, my lovely little Milo dogly!

The next questions are from Rich Hopkins.

1) When did you realise you were ill and it was ME.

I explained this one a bit previously…I didn’t realise it was M.E. for a while but the longer I was ill and not improving the more research I did. My GP diagnosed me with M.E. and then I did more research in to it and found that I had all of the main symptoms.

2) Does it frustrate you that the illness still has the ‘yuppie flu’ badge attached to it.

Yes, it does. I don’t think the term ‘yuppie ‘flu’ is so widely used now as there is more awareness of the illness but it still bugs me when I see it used. I’m not a yuppie!

3) What are you doing to personally raise awareness.

Well, I’m writing this blog post, wearing my ‘Invest in M.E.’ wristband and posting on Facebook and twitter. Hopefully some of my friends and followers will read some of what I post and begin to understand a bit more.

4) What has been the biggest obstacle you’ve faced in managing the illness.

The biggest obstacle was overcoming the need to try to do everything all at once. Pacing is key to managing the illness and it was very hard to get to grips with. It literally took me years to begin to understand that I had to rest and I had to listen to my body and I had do things in smaller chunks…not overdoing things doesn’t sound like much but it is a huge deal when you have M.E.!

5) Do you ever see yourself beating the illness.

I’m not sure it’s something you can beat in the same way as something like cancer, for example. People do recover either fully or partially but I think those people know that if they are not careful they could relapse once more. I feel much more able to manage the illness now I have the tools such as pacing and resting and relaxtion…although I am quite badly affected I am now much more stable, especially compared to when I first got ill, and feel like I can now gradually build on that. I don’t think I will ever be back to 100% how I used to be but I do still hope that one day I will wake up and I’ll be fine as quickly as it all started.

*click here to go to the Brainfog forums*

The next questions are from Milly Peede.

Is it true that M.E goes away?

Not really. Some people do improve, some recover fully but I dont believe it actually goes away. It is a neurological disorder as far as we are currently aware so, in a similar way to MS, it would never actually disappear.

Are M.E and Chronic Fatigue the same thing

This is a complicated one. Chronic fatigue is different to Chronic Fatigue Syndrome…the key is the syndrome bit. Chronic fatigue just describes one symptom which can also be a factor in many other illnesses. Chronic Fatigue Syndrome (CFS) is a sort of blanket term which people tend to get lumped in to and isn’t very descriptive of the actual illness. Here in the UK the terms M.E. and CFS are used interchangeably or sometimes both together (M.E./CFS).  Many people with the illness prefer to use the term M.E. as it is more descriptive of the illness and doesn’t indicate that it is ‘just fatigue’. Of course, other people prefer the term CFS so I suppose it is down to personal preference.

Is M.E really fibromyalgia.

Fibromyalgia is often present alongside M.E. Many people suffer with the fibromyalgia-type pains in joints and muscles but for it to be classed as M.E. you need to have various other symptoms along with that (usually fatigue, cognitive problems, digestive problems and sensitivity to chemicals/sunlight etc). I believe that M.E. and fibromyalgia are two separate illnesses which have some overlapping symptoms and you can have both at the same time.

All answers to questions are my own views…if you disagree with anything I have said please feel free to leave a comment. Also, please pass the link to this blog page around in order to help raise awareness as much as we can. Thank you.

Lots of Love,

Ele ~X~

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One response to “M.E./CFS Awareness Day 2012

  1. Pingback: M.E. Awareness Week | Ingenuity for life

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