What is it actually like to have a life changing illness?

It's so very hard to describe having an illness that "controls" your life, and makes it difficult to live life as you want to, in fact to live life as you used to, before you became ill.  In my youth I was lucky to be fit and healthy, fit enough to ride horses every day, to work with them, run when I wanted to, even go swimming on my day off from my 10-12 hour day.  I yearn for those days now.  As a mum, I have loads of things I must do every day.  And those things most people would take for granted.  Loading the washing machine, cleaning the dishes, cooking meals, making lunches, taking the children to school all take so much effort and energy, and these are just the absolute essentials! What about cleaning the house, hoovering, looking after the garden, shopping for food, looking after finances?  Even filling out a form can be exhausting, where it never was before. 

I feel so much sadness and loss for the person I used to be.  I used to be able to really walk quickly, to play with my kids, to go and do the shopping without worrying about if I'd have any energy left to finish the day.  Now I have to walk slowly and rest inbetween every task.  If anything unexpected comes along I have to dig deep and steal from tomorrow, knowing that I will pay dearly for it.

The Spoon Theory describes it so so well.  When I first read this I cried, and I still do on reading it again.  The author, Christine, has captured perfectly how it feels.  But this one paragraph in particular really resonates for me 

"Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons”." - See more at: http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/#sthash.Ii36lRsC.dpuf

I'm really feeling it at the moment, holiday hangover, together with the stresses of settling both children into their new schools, and back into the routine.  The weather has suddenly changed to very damp and colder, and I'm in a great deal more pain.  I very much enjoyed the summer, the warmth on my skin and mostly not needing blankets and loads of layers.  I had to use my stick again yesterday and I am stiff and struggling to move today.  Roll on next summer (or maybe a lottery win so I could spend winters somewhere warm! - I'll have to start playing to increase my chances above zero though lol)

CBT and Graded Exercise Therapy (GET)

As a psychology graduate I have been interested and highly sceptical of the effects of CBT and GET on ME/Fibro.  Particularly as I've noticed mood has very little or no impact on my ME.  I can be in a very positive, happy and excited mood, but that has little or no effect on my level of pain.  If anything it makes my pain more obvious, as I'm less likely to rest if I have things I need to do.  

Generally when I'm in that sort of mood its because I'm seeing someone or doing something excited, like our recent trip to Natural Mamas camp.  My ME/Fibro was atrocious on the day we arrived.  Every effort I put in to setting up camp was a complete battle.  Both mentally and physically, I had a lot of brain fog which impairs my ability to think (and communicate) on arrival day.  All this was despite me being in a happy and positive mood.  

I don't understand how learning to think differently about my ME (which is essentially what CBT or cognitive behavioural therapy attempts to achieve) will affect my pain and indeed health.  I don't think my ME is due to an error in processing, and CBT in my opinion addresses errors in processing.  That's why it is successful in treating anxiety which is due to our interpretation of the world around us.  I don't personally believe that's how ME works.  Anyway.  In this case too much knowledge may be a bad thing, and I might be proved wrong.  This report seems to suggest that I shouldn't get my hopes of improvement too high though.

I have added a couple of links to research websites today as well.  Take a look, some of the information on there is fascinating (worth directing your GP too as well)

Anger....and Sadness (and a rant against patronising judgemental idiots)

I'm feeling both in equal measure today.  I hate and detest this illness with a passion.  And it saddens me that I can't do normal everyday things.  It breaks my heart that my health has deteriorated to such an extent that I can't be the mum I want to my children a lot of the time.  Trips to the park have to be planned and are not the spontaneous fun trip they once were.  Shopping trips have to be carefully managed.  I struggle with noisy/bombardment/overstimulisation, and my children as lovely as they are can kick off and mess me around with the best of them.  I give in and end up with things we just don't need, because I just cannot cope with the meltdown and drama of not.  

We have a planned short break coming up.  A visit to friends tomorrow, another friends on thursday, on our way to a caravan break from friday to monday.  Today I *should* be getting ready, packing the car and generally getting organised.  We need some basic food shopping too - and I just can't face it.  But today every single chore has been a painful battle.  Raising my arms is exhausting and painful, moving the slightest bit is exhausting and is bringing on heart pounding (tachycardia?) and dizziness.  And yet, I'm a single mum, and these jobs have to be done.  If I don't do them, then we'll all lose out, because we won't be able to go.  

And so the kids are watching tv (the door is open and the back garden is available, but they're not in trampolining mood today) I am on my recliner, having trouble with managing my temperature (freezing cold and under blankets this morning, to suddenly hot and overheating with the window open and the breeze coming in now).

I am bone tired.  I really don't know how I can describe the physical pain in every limb when I move it.  The exhaustion that comes with ME is not just a mental exhaustion, it is physical too.  Imagine your worst ever hangover.  Then multiply it by a 100 and you'll be getting close.  I know this is probably the price I'm paying for totally overexerting myself (by doing the things everyone else takes for granted) at big camp.  Thats the thing I think.  Everyone else takes for granted just being able to say, put the washing out.  Or cook dinner.  Imagine if every day you do that it feels like climbing a mountain?

And today something really patronising and do you know what, downright rude caught my attention in the press.  Jamie Oliver (who I have some respect for in his attempt to get decent school meals into schools, and us eating nutritionally sound meals generally) has been spouting off in the press.  This article is the most patronising, hypocritical garbage I have come across in a long time.  So I just wanted to say Jamie - you, in your ivory tower, with your multimillions made off the back of paying your staff only slightly over the bare minimum wage, you have no fucking clue.  You are talking about stereotypes, and you really really don't understand do you?  Most of the people you judge for feeding their children crap, stop for just one second and wonder why?  I would love to give my children good home cooked and freshly prepared food every single day, but some days I just can't.  So I resort to ready made sauces, and frozen meals.  I really wish I didn't have to, but when I have zero choice in the matter, exactly what else do you suggest.  So what would you do if you were disabled and on a low income, living on your own with 2 young dependent children?  And you only had so much energy to use each day.  I've had to lower my standards way lower than I want to in so many areas, and I do my best.  Yes we have a reasonable telly, not a huge telly, its 32" - exactly how would it improve the food I feed my children to get rid of it?  That's the point of your debate I really really don't understand?  I have a telly because I have to rely on it sometimes for entertainment for my children.  We are incredibly lucky unlike many less well off families in that we have a garden.  The children have free access to it and get loads of exercise while I'm confined to my recliner. We grow as much homegrown fruit and veg out there that I can manage.  I do my best like many many other people in my situation.  It makes me absolutely sick to be judged and stereotyped by people who really do not understand or have a clue.

Rant over, normal service will be resumed shortly ;) 

We're surviving!

In fact.....shock horror....despite the exhaustion I've been feeling we've really been enjoying the holidays!

We managed our camping trip to the Natural Mamas big camp, which was huge compared to the first 2 years and so lovely! My dear friends there helped by pitching the tent for me and helping me set up, and generally giving me masses of emotional and physical support.  

I'm thrilled that we got to go and catch up with so many of our online friends and meet some new ones.  I took part in a couple of workshops, one of which was with the lovely Phoenix Handcrafts and look at this beautiful (nearly finished) doll I've made - her name is Ceri and she belongs to my dear daughter - I've been recuperating from camp by resting and finishing her off

The children have been with me most of the holidays, as their daddy has been working in the lead up to a big event he's part of at the end of the month, but despite missing my normal recuperating break I've actually really enjoyed all the extra time I've had with them.  They're away for 3 days now and I'm really missing them, but it has given me lots of time to recover from last weekends camping trip, and finish C's doll.  Plus I have loads of other crafting projects I need to get cracking on.  

Physically things are a bit pants, I'm taking more pain relief than I like to, with the accompanying not so pleasant side effects.  I'm more tired than I can describe, and having to rest a lot.  Today is a day of total rest, on recliner or sofa, with a little crochet thrown in.

Sleepy

So, what the hell is ME?

This article is fascinating and sheds some much needed light on ME/CFS  - its worth a read if you'd like to know more, or understand more.  I've only managed to skim read it so far, my brain isn't really up to absorbing much today, but what it does say is fascinating.  I hate the feeling I get of being helpless with ME.  I've been concentrating in the last few days on trying to keep at least one room clean (the kitchen) and cook good food for me and the children.  I've managed to make a shepherd's pie (and a bolognese sauce for a lasagna at the same time) and roast a chicken - I use frozen veg or preprepared veg a lot, to make this easier, although my children are getting quite good at peeling carrots and potatoes, and Big C is great at doing all the mixing if we bake :-) 

I've been having a very bad few days, I'm really not sure why, although parenting, being with the children full time, and general exhaustion is probably playing a large part in it.  I feel like I've run a marathon, and have done very little in the last few days.  I'm very worried as it appears the joint pain is worsening.  I'm back to really struggling with the acute pain using the stairs, and can barely move my neck.  All this while trying to field the daily battles between 2 children intent on winding each other up - somedays including today I've had enough.

Only a few days to camp now, so I need to get some organising done - my parents will help me to load the car, at this end, and I know I have some lovely mamas and papas who'll help me at the other end.  Just got to get there now, and at least then the children will have plenty to do and plenty of people to play with.

The hard thing with ME

Sometimes life with ME is really really hard.  I mean totally and utterly if I wasn't already feeling exhausted, shattering. Life is like that at the moment.  I don't want a pity fest, but right now, my favourite mantra (Dory in Finding Nemo), "just keep swimming" is about the only thing I'm hanging on to. Its hard to say what's worse really.  

I've been trying to go to bed earlier than usual, but in all honesty I need an hour or 2 on my own when the kids are in bed (and being summer I don't really mind them going to bed a bit later, so that is often around 9) - I am generally in bed by half 10/11.  I might manage to read a little, but generally its light off and hopefully off to sleep straight away (unless insomnia strikes - last time that hit it was probably nearer 2 before I managed to shut my brain up) - this morning I was woken up my screeching children just before 7 (a good day its often earlier) but they are of an age where I can still snooze for a while longer whilst there is no school to prep for.  I snoozed and was up at 9, got Caitlin ready for her play scheme (a free one at the local church we managed to get her on) and my friend picked her up (she's the one local friend I have who *really* understands I think) I was still in pyjamas at that point, and when she was dropped off again at 12.15.  Sorted out feeding for the children and I've managed a little washing of dishes.  The living room looks like a bomb has gone off in it, and half the dishes are still waiting.  The exhaustion is so bad today though that I feel incredibly sleepy and just standing up makes me feel faint and the vertigo is making my head spin.  

I still feel incredibly lazy, but I know its the illness causing this.  The reality is that the pain is way bad today and has been for a couple of days.  I think I'm heading for a relapse because my ankle, knee and wrist joints feel weak and unstable.  The slightest pressure and they feel sprained.  Which just happened with my wrist.  I had a bath without my lift (for the first time in ages, but it's just so much more relaxing and comfortable plus the kids prefer it not to be in there, so its been out for a little while and I've been showering) - the bath gives me much needed pain relief, but I had the frightening experience then of struggling to get out even with the extra rails I now have.  I'll be getting the lift put back in asap and the kids will have to get used to bathing with it in there.  

Today all I want is to sleep, and for peace.  The kids are bored and bouncing off/winding each other up, and I'm not really up to doing anything about it.  Such is this life with ME.  I'll keep popping the pills, and try to get through it.  This helps sometimes :)