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 :) 

So how to cope with a chronic illness and summer holidays?

This is something I'm still working on tbh.  Admittedly I use a fair bit of the "electronic babysitter" to make holidays more survivable.  I'm a single mum, so when they're up so am I, and sometimes it is incredibly hard.

I've put a few things in place to try and make life a little easier for all of us. We're lucky because we have a decent sized garden.  I find it hard to manage at times (I have friends who mow the lawn as I can't manage it myself, unless I want to cripple myself for days and my parents help me to keep it under control, with weeding, cutting back and so on) - the benefits we get from it are huge though.

So in the garden we have a trampoline, slide, toy cars, swing ball set, bikes and scooters - most of these are secondhand, ebay or gifts - its worth keeping an eye out as you can get some good deals if you search for them.  From a learning/health point of view we also have strawberries, blueberries, hopefully blackberries and raspberries in a year or 2 as well as an established apple tree that was here when we moved in.  All of these plants are nicely low maintenance, the kids love to water them and pick the fruit - and normally eat it before I see it!  The apples get turned into apple crumble and chutney when they're ready.  The plants aren't hard work, and we get lots of good from them.  We have 6 tomato plants thriving in the greenhouse (again generally watered by the children, although I need to remind them as they're looking a bit dry!)  All of these mean that if I'm too ill to go to the park or take them out the kids can burn lots of energy and have fun outside, and I have a lovely camping chair I can use outside to sit with them.

Here they are: 

Inside we have a lot of toys.  My living room I'd love to be a haven of tranquility, but really its a play room.  When I'm feeling very rough, I can sit in my recliner with my laptop or crochet, and a blanket most of the year, and the children can play, Conor's current obsession is the Octonauts, and as he's just had his birthday our house is now rather full of plastic Octonauts toys.  I am working on containing them but they come out again every day!  

Caitlin is very crafty, so we do quite a few crafty things too...I do get a little frustrated with messy crafting, mainly because of all the energy it takes to clean up, but yesterday they had loads of fun with playdough for quite a while.  I must remember to take photos!  Caitlin made some very interesting multicoloured monsters :)

This was the fun we had making teachers gifts early in the week 

We've bought the Sainsbury's summer activity book this year, it looks like it has a lot of ideas in there, plus we can keep a diary of all the things we do in the scrap book it has in there.  Pinterest is another great (highly addictive) source of information, that we use regularly.  A lot of Conor's birthday ideas came directly from there.  I'll do another post on that soon.  We had a lot of fun, especially creating a party theme, but it was a lot of work and quite exhausting.  

On a good day we'll be off down to our local park, which has an amazing paddling pool.  Its fantastic fun for them, but a strain for me (I end up in a lot of pain if I can't sit properly, plus there is the physical effort of getting there with the things we need - I have contemplated driving there and paying to park even though its only a few (normal persons) minutes to walk away, takes me about half an hour to get back from there now), so not something we do anywhere near as often as they or I would like.  If I could transport my home comforts there with a click of my fingers I would.  

Today I need to rest, as tomorrow we're off out.  We're taking my mum wedding outfit shopping, which'll mean a bit of a drive for me, then I'll be handing the children over to their dad for 2 whole nights after they have lunch with us.  I'm looking forward to catching up on some sleep and uninterrupted crafting time while they're gone, although I really miss them too.  

We have lots of plans for the summer, not least of which will be a week away camping, which will include the Natural Mamas Big Camp  - our 3rd year there and the children and I really can't wait.  It's an awesome event full of fantastic people.  I get to see some great friends, and my lovely children will have a whale of a time running wild!  We have fairy house building, camp fires, a waldorf doll making workshop for me and loads more all planned.  And fingers crossed I may even come back with a head of dreadlocks....

I really enjoy having my children with me for the summer, there is a lot less stress as we don't have to worry about school runs and rushing around, we can just stick to our own relaxed times.  Caitlin is booked into a free activity week with our local church which I know she'll love.  It's great to be able to relax in pjs too with no plan to get dressed all day as well!

An Interesting Article

I read this today.  And it concerns me greatly, not just the article itself but the comments below.  I have been referred to a "specialist fatigue clinic", and the first thing I have been offered is referral to a psychologist.  I know my illness is not psychological.  However, because the beginning of it coincided with a very stressful time in my life, following years of emotional trauma, that must be the cause no?  

In actual fact it is well known that long periods of stress can physically damage the body, the endocrine system is constantly out of balance.  It is a long time since I did my psychology degree, so I'm struggling to remember what was taught then.  Bear in mind as well that psychology includes the important area of neurology, brain function.  I think there is a huge amount of confusion between these two areas.  Neurology was described as biological bases of behaviour when I studied it.  It was very much focused around the physical properties of the brain, and function, rather than the study of emotions and how they affected our health.  

Many "therapies" offered by the clinics are based around changing behaviour, our response to situations, etc.  TBH i very much doubt the efficacy of these approaches, and feel very sceptical about them.  I know that I do everything I can to pace myself, and do what I can manage.  And I know my illness is not due to how I process things, so CBT isn't going to change anything.  I can feel positive and do something I enjoy, be it a little gardening, socialising whatever.  The resultant "hangover" can feel like I've run a marathon, or I've been hit by a train.  Over exertion, stimulation, whatever has a physical effect.  IT ISN'T BECAUSE I HAVE AN ERROR IN PROCESSING!

The physical effects of doing too much are extremely unpleasant.  The thing is doing too much in my world is very very little to others.  I've been trying to keep up or at least help a little as my parents have been working on making my garden lower maintenance for me (My parents are both elderly, and far from fit, but the tragedy here is they're fitter and more mobile than me).  Just standing around and planning, with the occasional holding a measuring tape and a little bit of planting knocked me out for days - I get to a certain point when my legs will start to shake, and my arms are the same.  That means total rest, no housework, kids get microwave meals or snacks, and I can be found snuggled under a blanket on my recliner, drifting in and out of sleep.  Normally after a day or two like this I can start to do a little more again, and hopefully catch up a little, but the last use of energy has left me like this for almost a week.  My children were here with me this last weekend (normally they spend 24 hours with their father who was working) - I am so proud that I managed to take them to the swimming pool.  It did mean that this morning after I took the big C to school, and the small C to preschool for his morning session I went back to bed until my alarm woke me to collect him.  C'est la vie I suppose.

I should sign off now so I can look at the mountain of housework which is tormenting me, any volunteers to come around and help me clean (ok clean whilst I tell you what needs doing)

Apologies for the extreme rambliness of today's post.  I am not really thinking very straight, but I feel the need to write, and part of the purpose of this is so I can collect together things that interest me, and also try to collect my often scattered thoughts.

This is how I feel today

People don't understand that awful absolute exhaustion you get with ME/CFS.  It is hard to explain what it feels like.  This week I had to over exert myself (by my standards anyway)  With the help of my wonderful Mum, we took my little boy for his second (this time sleep-deprived) EEG.  We had to keep him up late, and get him up earlier than usual and leave early in the morning for his appointment.  Just that little bit of exertion has wiped me out for the whole week.  I have had to neglect the housework, and rest as much as I can.  So if anyone ever wonders why I am grumpy, and exhausted, this is my life.  The tiniest exertion.  Something small.   Means the absolute exhaustion, and agonising pain is here for the duration.  Keeping going until tomorrow at least, where the children will go to their dads overnight, and I will sleep.....

Well here I am, and this is what I am

In September last year, after a couple of years of ongoing sometimes intrusive tests and repeated blood tests, my GP finally diagnosed me with ME and Fibromyalgia.  In a way it was a relief to finally be able to put a name to this thing which has overwhelmed me, and which plagues me on a daily basis.  But in a lot of ways, it was a lot worse knowing.  Because unlike some of the other illnesses suggested and tested for, ME and Fibro don't have a quick cure. Or indeed any cure at the moment.  This is a battle I have to fight day in day out for I don't know how long.  No one can tell me what the prognosis is.  Only that some people get better and some don't.  Some have deteriorating health, and some have episodes or relapses.  

Since I had my diagnosis, I've studied what I can, and learnt as much as I can about the illness.  My GP is working with me to try and find effective pain control, and to treat the illness however we can.  Currently I take an anti-inflammatory (naproxen) and copious quantities of codeine and paracetemol for pain relief.  Citalopram, Vitamin D and Calcium supplements, Zinc and Vitamin C (I take these to try and boost immunity, as I seem to get every bug going).  I've finally got a referral through to our local CFS specialist clinic, so I can start working with them on managing my illness.  Sadly though most of what I do already seems to be what they advise.  Pacing seems to be the most effective way of functioning and getting through the day.

Anyway, about me.  I just turned 41, I have 2 gorgeous young children, who can be alternatively brilliant and total handfuls, sometimes changing in a matter of minutes.  They help to give my day some structure, as I have to get up for school runs, make lunches and teas, and organise everything for them.  There are many times that this is incredibly difficult as you can imagine.  

I've decided to write a blog as a sounding board, a way of keeping track, and somewhere to share information and hopefully support to others.  

This is me and my personal journey with ME.