Wednesday, 26 February 2014

Setback Survival

Things aren't so good just now. This current setback is starting to look more and more like a relapse. I'm hopeful that it won't be as bad a relapse as the one I had in the Summer of 2011 though. I'm not back in the dining room (yet) and I hope to keep it that way. The best place for me is bed, but at least it's the bed I my own bedroom.


  • Wet wipes
  • DVDs and lots of them
  • Jug/large bottle of drink next to my bed
  • Mobile phone
  • Blanket
  • Fan
  • Comfort food
  • Tissues for the tears
  • Electric toothbrush - so it's easier for someone else to brush my teeth if I should need them to, unless they're like my mum and get the giggles...that was messy! 
  • Straw for stinks - it's easier on my arms if I don't have to raise a glass to my mouth, or if I need someone to 'feed' me drink
  • On the days I'm able to spend time downstairs I try to change which sofa I sit on or which angle I'm facing. It gives me a different view/perspective of the room which helps kid myself that I'm not staring at the same four walls for days on end. I do the same in bed; shifting myself between the left side, the middle and the right side of the bed. 
  • Amazing socks so that at least my feet look cheerful
  • Wardrobe door of inspiration - I love a good inspirational quote and my wardrobe door is covered with them. My current favourite is "Today is life - the only life you are sure of. Make the most of today."
  • Rest
  • Rest
  • Rest
  • Listen to my body, forget the targets and goals for now
  • Most importantly I am kind to myself - this is not my fault. Berating my body and brain won't make things any better. We just have to ride the storm. Nothing lasts forever, be it good or bad. This too shall pass. This is temporary (no matter how long it lasts, it won't be forever.) 


I dug out the CFS/ME clinic notes on setback management and this struck a chord with me: "As your symptoms improve, have the confidence to gradually begin to build up your activity again. One step at a time...slow and steady wins the race." Setbacks do knock one's confidence. A lot. You have been plodding along with progress, being careful and mindful and sensible and suddenly everything comes crashing down around you despite doing exactly as you should be. You become very vary of starting over yet again because you know that you will be knocked down once again. All I can do is hope that each setback, when it comes - because it will, will be better than the last. 

"Accept that Setbacks are a normal part of CFS/ME." Well, I'm trying.

We, as M.E. sufferers, are (sadly) used to the One Step Forward, Two Steps Back way of life but setbacks are more like five steps back, and relapses....more like ten to twenty. They take colossal amounts of inner strength and determination to not just throw in the towel and sink into despair. Today it would have been much easier for me to allow myself to sleep all day. But that won't do my body clock any good and I personally feel even worse after sleep. In the long run I did the right thing in keeping my eyes open. 

And at times like this I still cling on to those silver linings with every ounce of energy I have left and I am so grateful that that is the way I am. This evening I noticed another milestone. I was in bed and I leant down to unplug my phone charger from the extension cable under my bed. Not only am I now strong enough to pull a plug out of a socket but my core muscles have strengthened enough to allow me to sit back up again. Such 'exertion' would once leave me flat on my stomach with my arms dangling down the side of the bed. I'd have to shuffle myself into a position where I was able to push myself back up with my shaking arms. Not anymore it seems. Looking at the bigger picture like that is keeping me sane and helping me stay hopeful. 

EVERYBODY WANTS HAPPINESS, NOBODY WANTS PAIN, BUT YOU CAN’T HAVE A RAINBOW WITHOUT A LITTLE RAIN. 

Saturday, 22 February 2014

Depression and M.E. - Guest blogger

Recently I asked my twitter followers if anyone would be willing to share their experience of Depression and M.E. There will hopefully be other guest blog posts to follow as I feel it's important to show all sides of this illness, even if I can't talk about them first hand. Thank you to Miranda for being so honest and articulate. 

Depression and ME

I have had both in the extreme. Severe depression as a teenager, where I couldn't bear to wear colour, to sit in the sunlight, to be with anyone but my cat. A life of greyness, dullness, where nothing mattered or motivated me. Lethergy, lack of interest in future, present or past. Not wanting to exist.

Then severe ME as an adult , where EVERYTHING counts. Devastation at the loss of my life, frustration that I cannot create nor do due my body being paralysed with fatigue, racked with pain. Feeling taken to the point of death and being held there. Bedridden, loss of dignity, having to be spoonfed. Anger at the disbelief and criticism.

Yes, I've wanted to die with severe ME, but only because I want the horror to end, the miserable, endless suffering. But, I would rather get well than die. With depression I couldn't see beyond that illness nor did I want to. With ME I fight, fight, fight!

Now I admit to both, but the depression is as a result of the ME. For 12 years of ME I fought off depression, always using every ounce of energy to plan, dream of and create my recovery. Even the paralysis and trauma didn't put me back into depression. And now, even though I am recovered to the point of being able to wash myself, feed myself and walk a few steps a day, what has brought on this new depression is FRUSTRATION. And the more I recover the more frustrated I get. The world is there for me but I still cannot enter.

So, Depression and ME. Two totally different illnesses.  They are worlds apart and should NEVER be confused.

Miranda Brewster - @MiranTheTempest

Saturday, 15 February 2014

The Fear

I imagine it's hard for a parent to hear their child say that they're feeling so poorly they worry they won't wake up tomorrow; that they feel so poorly they're scared that they might die in their sleep. There are no tears or hysterics when I say this to my parents. Just a matter-of-fact statement indicating just how poorly I really feel. The smile hides a lot you see. 

This fear is different from mere worry. I've always been a worrier and about the most ridiculous things too! If I could go back in time I'd grab my younger self by the shoulders and give her a firm shake... But then I probably wouldn't be the person I am today. Now it is definitely fear that I feel though, not worry.

These fears aren't ever present but when they hit me, they can hit quite hard. 

I imagine these are shared by my fellow sufferers: The fear that benefits are being cut and if it happens to us we will be left unable to afford food. The fear of being left homeless if we cannot afford this months rent again. The fear of what we will do as our parents get older and need caring for themselves.

There is the fear that things will plateau or decline and I will spend the rest of life like this. Sometimes I think I fear the uncertainty of it all. The only thing I am truly certain of is that I will wake up tomorrow feeling poorly. Sometimes it is very hard to fall asleep knowing for certain that it won't be any better in the morning.

There is the fear of what I will do should something happen to my mum; the one person who seems able to read my mind. I fear it so much that I almost start to prepare myself for when I cannot turn to her. Yes there will be others around and I will always be looked after, but my wonderful mum has slotted into her role as my Wonder Woman with apparent effortlessness. It just wouldn't be the same. 

There is the fear of payback. I am careful to have days or weeks between 'activity' because it's the sensible thing to do, but knowing that the payback will be worse if I see friends too frequently or bake a cake too frequently can almost prevent me from doing things too and that isn't fair when I am already having to miss out because of my physical health. I have a fear of being forgotten by the friends I shared my life with before I was ill. I have a fear of the future. Sometimes I even fear tomorrow. I fear what is happening inside my body. 

There is little comfort in people saying "Keep things in perspective." What is the perspective? That I'm not terminally ill?

This fear is unfixable. It comes hand in hand with an incurable chronic illness. 

Mostly I am in fear of the illness itself and its unknown. I am scared of M.E. I am petrified that I will have to move my bedroom back into the dining room for a start. I am petrified of having to start all over again. I am petrified that this might be a relapse rather than just another setback. Petrified. 

Sunday, 9 February 2014

Contradictions and confusion - Guest blogger

I 'met' Paul on twitter quite a while ago. His tweets are open and honest and, in my opinion, show incredible courage. I asked him if it would be okay to include some of his recent tweets in my "I'm sorry what?!" blog post. What he emailed me though, was worthy of a post of its own. Thank you for letting me share it Paul. 

____________


The following is a borderline coherent rant on issues I have faced and feel need airing, having suffered with M.E (CFS) over the last six years. They are taken from various tweets which explain the rather statement like narrative of the rant. It is by no means complete and merely touches on what is a very contentious and frustrating topic for someone who has taken the time to research and has years of lived experience.

First is a short list of contradictory advice and statements I have received from various GPs.

"CBT will help you recover" "Don't trust doctors who leap to psychiatric diagnosis"

"You're probably depressed" "I can see you're happy"

"You had a virus which is now gone" "Your M.E was potentially triggered by your operation but there's no evidence of a virus"

"Tests don't show anything" "These results show severe immune system
dysfunction"

"Don't worry about it" "This symptom could be dangerous"

"You're a very healthy young man" "You have a serious physical illness"

"Never push through it you'll make yourself sick" "Exercise daily"

"Try acupuncture" "Don't trust treatments like acupuncture it's pseudoscience"


The biggest issue is of exercise/exertion. Berated by one side for not doing enough. Horror stories from the other on the dangers.Yet as always, it's the patient's fault for not listening to one side over the other. The problem is simply ignored. You ask questions, ignored. You ask for evidence, ignored. You explain a treatment makes you worse, ignored.

Then there's the issue of how our objections are sometimes summarised by those who are supposed to be on our side. Again, excuse the bullet point nature here.

"Patients swear blind it's a physical illness" Erm, no, we don't. At all. We oppose dangerous treatments based on spurious evidence. We have examined the evidence and think a physical explanation is the most likely and warrants proper investigation.

We value psychiatry in it's role in helping us adjust to a serious illness. We have tried the treatments and they have made us sicker.

We are informed, educated and know more than our GPs.

We are not opposed to psychiatric explanations of our illness, we welcome them.

We do not welcome psychiatric explanations that have dominated
discourse and have resulted in ineffectual treatments for over 30 years.

We are opposed to forced sectioning and forced treatments that result in the deaths of patients and permanent psychological damage.

We also don't accept that there is simply one illness called CFS. When
we say "it's probably a physical illness" what we mean is there is a distinct sub section of patients under the CFS label that are clearly separate from those simply suffering from fatigue. That we have been thrown into a waste basket diagnosis with patients that may benefit from psychiatric treatments and have these positive results extrapolated as beneficial to us when they are clearly not.

We then read articles completely misconstruing this position which
further cements the idea that many involved in our treatment aren't
interested in science at all, but pushing a viewpoint not supported by evidence but personal opinion. If your explanation of an illness rests on lying, twisting words, holding back data, intentionally conflating
several different patient groups under one vague diagnosis, ignoring negative patient experience of treatments and fail to tackle head on, numerous evidence of biological explanation and potential success with drugs that target immune system function then don't be surprised by patient backlash.

Paul Gadsden - @HylomantisL 

Saturday, 8 February 2014

I'm sorry what?!?

Rest but don't over rest. 

Remain hopeful of recovery but accept that recovery may not be possible.

Eat foods that will give you a slow release of energy but don't over eat as you'll gain weight from lack of exercise.

Do simple exercises/stretches to stop muscle wastage but don't overdo it as it will cause a crash or setback or relapse.

Accept your new limitations but don't give up the life you love.

Go to your GP every time you get a new symptom but don't expect your GP to offer much advice.

Be sure to set goals and aims to keep you motivated but don't get discouraged when you are inevitably too ill to reach those goals.

Stick to a routine but don't get stuck in a rut.

Listen to your body but push and coax it back to 'normal'.

What?!? How?!? It's all a massive contradiction!

Is it any wonder that we feel lost? I often think that recovery, or survival, is very much like being in a maze...blindfolded. In fact I'm so lost that this post isn't 'up to scratch' really; because I can't get see the wood for the trees. I feel almost deflated by the enormity of the task ahead; recovery.