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Sunday, 25 January 2015

Misleading and not helpful


I deliberately keep this campaign light and upbeat as I feel there are more than enough heart wrenching ME life experience blogs/campaigns/websites in the world already. I am trying to make this campaign engaging and enjoyable to follow whilst highlighting the awfulness of this increasingly common debilitating illness. I think non sufferers do not understand the politics surrounding the ME/CFS debate and many of the other issues which cause discord among sufferers/campaign groups. I want to focus on educating without the veil of politics confusing the issue. I don't usually comment on the latest research findings as my brain just doesn't understand what it is reading (I was dreadful at Biology at school) and I don't want to add fuel to an already confusing medical subject.

However, last night I went to a friend's house for dinner (very nice too) and a recent article came up in conversation. She asked me if lack of exercise could contribute to my symptoms. I wondered if she was asking the question because of the research article published this week, she said yes it was. I spent the next 15 minutes attempting to explain why/how exercise affects my symptoms (I don't think I did a very good job as I/we don't know why!). Her view was that if symptoms were already bad without exercise then surely exercise wouldn't have an overly negative impact. I explained that it makes symptoms 10 times worse. She is a supportive friend and accepted my reasoning without arguing...I wonder if other sufferers have encountered that this week?!

The article below was published in the Guardian but it could also be found in a number of other newspapers this week.


This article made me incredibly cross; yet again it hints that ME sufferers are lazy and avoid exercise. Let me explain how MY body reacts to exercise.

I hate that I can't walk/cycle to work and drive in every day. It would be about a 45-minute walk door to door and I know some of my colleagues do this. I know that halfway to work I would start to get dead legs and by the time I reach work, I will be so exhausted I will be too tired to do any work and would have to go home. the overexertion would impact the next few days and would probably lead to a few days off sick. Many times, I have taken my dog Patch on a 30-minute walk and when I reach the farthest point from home my symptoms double. I get brain freeze; I just can't think straight and my legs go numb. I collapse when I do get home, I am usually shivering whatever the temperature, have swollen glands, my cognitive skills will have gone AWOL; my spinal cord feels like a flimsy piece of spaghetti and I can't hold my head up as it feels like a dead weight. I only take Patch for walks at weekends so it doesn't impact greatly on work, luckily.

A few years ago I went through what I will call a remission period. I could go to the gym 3 times a week...do a 30-minute cardio/weights session and then go to work. I used to get that lovely post exercise buzz until around lunchtime, symptoms would gradually get worse throughout the day and I would be exhausted by bedtime but it was manageable. I had been advised by doctors that exercising could help with my depression and M.E. and so I was experimenting. Unfortunately, I then experienced stressful events in my life and thoughts of exercise vanished as my M.E. symptoms came back with a vengeance.. 20-30 minute dog walks have been my limit for the past 2 years.

My own personal view is that, if you have moderate/mild M.E. then it is good to stay a little bit active so that your body doesn't go to sleep completely. To be honest, just struggling into work, shopping, day to day tasks cover that without the need for specific exercise. Movement is a good thing if you can do it. However, severe sufferers can't do that and I am assuming that just breathing is enough movement to have to cope with; let alone speaking, blinking, watching and interpreting things around you.

I do not have a fear of exercise, I simply have to micro manage my energy levels to make sure I have enough energy to get from A-Z every day without collapsing. I find it incredibly insulting that the research team mentioned in the article seem to think that we don't exercise because of fear. The article is extremely distracting from the key issue; we need more research into the causes of the illness not just random headline grabbing rubbish about how to manage symptoms. Most sufferers listen to their own bodies and manage symptoms accordingly. Having the illness is bad enough without having non-sufferers preaching that we don't help ourselves by not exercising.


Tuesday, 6 January 2015

Brain fog


I (Sally) have insomnia (one of my M.E. symptoms) and I have decided to write the latest blog post while Foggy is fast asleep in Foggy HQ.

This blog post is about perhaps one of the most noticeable symptoms for me to deal with. It's a symptom that other people can actually detect, some days quite easily! Brain Fog.

In the past few months, my brain fog has got worse. Family and friends are noticing more frequently that they have to finish my sentences (surprisingly not annoying - much appreciated!) or remind me of things I have done. Twice in the past week taps have been left running because I have been distracted and forgotten that they were even turned on! Luckily there were other people around to turn them off to avoid a soggy carpet!

Pre-M.E, I was like a human dictionary; spelling was something I excelled at, but now I question simple word spellings and constantly doubt that they are spelt (is it spelt? Or spelled?! ....see???!!!) correctly. Friends used to come to me if they needed help with spelling instead of a dictionary but now...not so much! I even make up words; for example I have been saying 'lackage' for months. In the context of....'I have a severe lackage of brain power today'. In my mind it SOUNDS like a word! I even looked it up in a dictionary to see if lackage exists...it does....but not in the same context. I struggle for words all of the time and so maybe it's not surprising that I have made up my own!

I find the inability to string a sentence together (occasionally) extremely frustrating. I literally freeze like a mouth gaping goldfish while my brain fishes around for the right words to say. One of my current habits is starting a sentence, having to stop because I have lost my thread, I pause (5 seconds), say 'rewind' out loud (so whoever I am talking to knows I am not going nuts!) and start again. I tend to start sentences half way through as if I am in such a rush to say the uber exciting thing I am thinking about out loud I miss half of it! If I get distracted and have to come back to the conversation minutes later do you think I can remember what the heck I was talking about?!!!....um.....no chance!

When I am extremely tired I find following conversations difficult; I kind of zone out. My friends can see when I tune out of what they are saying. Apparently I look blank and a bit vacant. I wish I could capture in a photograph what my eyes look like when I am very tired and zoned out as, I've been told, sometimes it's the only indicator and my invisible illness can be seen. I've lost count of the amount of times per day I say 'I'm not sure if I have said this to you already but...', my short term memory has never been great but has got noticeably worse since having M.E. I can't remember names, place, dates, events. Diaries, wall charts and calendars are my life savers! I know a lot of non-sufferers say that but if I don't put it down in some kind of reminder I completely forget. I've missed work events, meetings, social events, car MOT's, tax renewals, vet appointments...I even forget my medication dosage! Memory loss can be a bit of a nightmare when I try to remember which medications I am allergic to! There are now so many I have to have the list written down. I even forgot how old I was a couple of months ago. I had completely lost 5 years! My mum and I had a slightly weird conversation as I/we worked it out!

Learning new stuff can be testing; it does depend on how it is delivered. I can't do wordy emails or documents. I lose concentration very easily. Perhaps (even though I have an English Literature degree) that is why I haven't read a book from start to finish for a very long time. I lose concentration after a few pages and completely forget what I have just read! This makes me sad - I used to be a very booky (is that a word?) person; I always had my head in a book pre-M.E. If I have to learn things in a practical way, and actually 'do' the thing I am learning, I find it so much easier to remember. 

During low moments, I doubt that I have attained a post graduate degree. Who me? I did that? Are you sure?! I have no idea how I found the mental capacity to study at that level...and pass! That is when my M.E. symptoms began; I am very glad that I did not accept the advice to take a break and try again at a later date. I definitely would not be able to study so hard now; I simply don't have the energy or brain power to write about comparative Russian politics...at length!

I find it very difficult to talk about myself in the third person on social media. Obviously, Foggy only has tiny paws and can't type ( ;) ) so I have to do all of his admin work for him. I have been picked up a few times by eagle-eyed Twitter and Facebook followers for speaking in the wrong person. With all of the work I have to do on a daily basis is it really surprising that I slip up occasionally?! When it is hard enough coming up with something to tweet about, then working out how to make it engaging and then thinking about spelling etc...my poor brain gets a bit fried! 

Love from
(and Foggy OBVIOUSLY)xxxx