Sunday, 19 May 2013

A Day In My Life...

I thought since it's still ME Awareness Month at least I would do a blog post about a day in my life. Nothing special about the day described, it will just be an average day.

A day where there are no appointments to attend, no family or friends visiting or to be visited so no need to put on an act to protect them from seeing how bad the ME actually is, just a standard day in my life at the moment.

I wake up feeling unrefreshed, like I haven't slept, no matter how long I have been asleep for. My body feels heavy, stiff and painful as I slowly stretch and assess the pain level I've got to cope with. I struggle to move to get out of bed, I want to get up but it's not that easy. I have to slowly sit up or else get dizzy. Gradually move my legs round to the edge of the bed and place my feet on the floor. I gingerly stand up, wondering if my legs will support my weight, grabbing onto the bed, bedside cabinet or other piece of furniture for support if they don't. Once standing, which can take a couple of attempts, I slowly make my way towards the dreaded stairs, using walls and door frames to hold onto for support if I'm unsteady (often the case!).

At the top of the stairs a decision has to be made - to 'walk' down them using the hand rail and wall for support or to 'bottom shuffle'. This depends on how unsteady my legs are, the weaker they feel the more likely I am to 'bottom shuffle' down the stairs still holding onto the hand rail!

I reach the bottom by whatever means (normally avoid falling which is always a positive!) and have a short rest. The tackle the task of getting breakfast. This involves as few trips from fridge to worktop, microwave to worktop etc. as possible. I also tend to use a perching stool whilst getting breakfast which is normally instant hot oat cereal made with rice drink instead of milk, as it's a fairly healthy quick breakfast and doesn't take much energy to chew. I take some painkillers, and a supplement with that.

I have a cup of green tea after breakfast whilst resting. Then embark on a trip upstairs to get some clothes (why I don't bring them down when I get up I don't know!!) This takes a while and involves a rest when I reach my room and another one when I get back downstairs. Then I have help getting changed - I can't bend my legs enough to get socks, trousers etc. on myself so have to have my Mum help.

By this time it is normally 11am, I either rest or do a little study - I can only study for around 20-30 minutes at a time. Even then I'll end up distracted after 10 minutes so will have a few minutes break!! Whichever I do I tend to be semi-lying on the sofa. I might also take a slow 'walk' on my crutches down the garden to our pond where I'll check on the fish, feed them etc.

Lunchtime! I'll move from my position on the sofa to the kitchen to get some lunch, just a sandwich. I'll have another cup of tea but I don't make these as I can't lift the kettle. If I do make a hot drink it's using a hot water dispenser but that's only normally used when there's no one home as carrying a hot drink through the house can be rather difficult!

In the afternoon I'll watch a bit of tv (normally just after lunch), do a little more study and most days I have an hour's nap. I take more painkillers just to keep the edge of my pain.

Evenings are my worst time of day, all my energy has been used during the day and I'm running on empty. Dinner will be made for me, and come 6pm most nights I am ready to be in my pjs and bed. However because the bathroom is downstairs I don't tend to do this unless feeling really very unwell. Instead I get in my pjs (with help from my Mum) and collapse on the sofa with a spare duvet and pillow. The pain and fatigue at this point in the day is really bad.

At around 10:30/11pm I make my way upstairs to bed with one of my parents following up behind me keeping me steady if necessary. Once in bed I often find it difficult to find a comfy position to lay in, so spend a while unable to sleep trying to find the least painful position before falling asleep.
This is a 'normal' day for me at the moment. Some days are worse so I do less and others are better so I do slightly more - whether that be going out to a doctor's appointment or having a friend or family member over. But when people visit I always put on a brave face, an act so they don't see just how bad the ME is. I don't do this for my sake, but to protect them from the truth. There are some who see the 'real' me now but it's taken a few years for me to 'drop the act' for them. And if they themselves are having troubles or stresses the 'act' of being better than I am and not letting on how bad I really am comes back to protect them. I don't want to add to their worries.

I'm hoping this blog post makes sense, I haven't really reviewed it properly so apologies for any mistakes!!

OH and just as an extra bit about my life right now: I got my last assignment back...and scored 95%!! More details on that and how the studying is going are on my other blog:

Bye for now, as always let me know your thoughts and comments either on twitter @SmilingClare or add a comment to this post and I'll reply when I'm able!

Monday, 13 May 2013

Today's an Anniversary of Sorts...

Well I hadn't intended on writing again so soon but today is proving a bit difficult and I thought I'd share with you why.

Today May 13th 2013 signals 8 years of me officially being diagnosed with ME. It's not an anniversary to celebrate, nor one to mourn. So just how do you behave on the anniversary of a diagnosis with a chronic invisible misunderstood illness like ME?

Other years this day has come and passed without me paying much attention, or looking back on the past year and seeing how far I've come - how much better I am than I was a year ago. I guess that's probably why this year it's proving more difficult - I am in fact worse now than I was a year ago, much worse in fact.

This time last year, ok I wasn't at my best but I was walking mostly unaided, walking into town and generally able to lead a much more normal life than I can now. I was still limited in what I could do but to me after being housebound/bedbound between 2005 and 2009 it was still something to make the most of and enjoy - I was almost normal!

Now I'm really struggling again, it all went downhill in October 2012 and has pretty much continued until now! Virus after virus, infections, allergic reactions and pressing uni deadlines have all resulted in a couple of quite severe relapses as you may know if you've been reading my blog during this time.

I'm just finding it hard to comprehend that it's been 8 years since I got ill, 8 years since I was diagnosed, 4 years since I last had any support from the hospital. I'm now almost bedbound again. I rarely leave the house unless absolutely necessary because it leaves me incredibly exhausted and in so much pain.

Each year in the past 8 years I've been able to look back and identify at least one symptom that has improved, no matter how slight and seemingly insignificant that improvement might be! But today I'm looking back and realizing how many symptoms have got worse or come back again. I can't identify one thing that has improved in that sense. Which I think is why I'm finding today so difficult.

Isolation is getting to me as well at the moment - only getting out for necessary appointments which absolutely exhaust me is disheartening. My home is becoming a prison again and there's seemingly nothing I can do to prevent this, I need to rest to get better and the only place to rest is in these four walls.

Oh well, on a more positive note...


I'd like to include a MASSIVE THANK YOU to everyone who took part in ME Awareness Day yesterday - be that posting and sharing on facebook and twitter or taking part in sponsored events. And to all of you taking part in ME Awareness Week THANK YOU too!
Together we can and will raise awareness and understanding of this devastating illness.

Thank you for reading my ramblings and current struggles, feel free to comment or tweet me. Bye for now!

Tuesday, 7 May 2013

An update on everything PLUS ME AWARENESS WEEK!!

Well I can't say a lot has changed since the last time I blogged! Things have improved slightly - I'm no longer as sensitive to light. Noise sensitivity is still pretty bad tho. I am finding it a lot harder to walk even around the house, and getting dizzy incredibly easily - the past few days it's been a struggle to sit up. But we're slowly improving again now.

Study wise I somehow managed 93% on my second CMA and 83% on my second TMA. Amazing considering a lot of the studying was done whilst incredibly ill. I'm now working hard on TMA03 but it's really taking it out of me and the workload is proving a struggle.

It's ME Awareness Week!!

Now for those of you who aren't aware this week (6-12th May 2013) is ME Awareness Week. So I thought I might fill you in on my background and the daily struggle I have. Everyone with ME is affected differently and this is my personal story with the symptoms I suffer from on a daily basis.

I was 12 years old, in my first term of secondary school when I got a sickness bug. I spent a week off and then returned to school. But I was struggling - I had a sore throat, headache, all my muscles and joints ached and I tired very easily. My parents put this down to the after effects of the sickness virus and the fact it was coming towards the end of term, it had been a big change going from primary school to secondary school!

After the Christmas break I returned to school as normal for one week, before getting sinusitis and being off for two weeks. From then on the difficulties came. The symptoms I had been getting before the Christmas break were now a lot worse and every morning there would be tears because I didn't want to go to school feeling as I did. My parents took me to the doctor who couldn't find anything physically wrong with me and told me I needed to go to school. It was suggested I was being bullied - which was totally untrue, in fact for once in my life I wasn't being bullied but being accepted for who I was.

This continued for a month or two, me being pushed and pushing myself into school although I would do my work alone in the special needs room to save walking around. The doctor eventually referred me to a pediatrician who diagnosed me with Post Viral Fatigue Syndrome. They said I would be better within a month which to me was such a relief. But I was to carry on with going to school etc. So it all continued with no improvement which was very disheartening. I went back to the pediatrician a month later who couldn't understand why I wasn't better! Because of the joint pain I was referred to a Rheumatologist.

On Friday 13th May 2005 I was diagnosed with Myalgic Encephalomyelitis after lots of blood tests (too many for someone who has a phobia of blood AND needles!) But at least I had a diagnosis - Someone actually believed I was ill! The sense of relief that brought me was unbelievable. From then on I got help from the school - I was supposed to do half days but that turned out to be impossible so home tutoring was provided.

By this point I was virtually bed bound, well sofa bound. I would get up come down the stairs and lie on the sofa. I had considerable pain all over my body but the worst of it was in my legs. I had a constant headache and sore throat with varying degree of severity and it was a struggle to eat - I would feel hungry, my parents would make a lovely meal, I'd take a few mouthfuls and be full or too tired to eat any more. I would only move from the sofa to use the bathroom, had to have help getting dressed and showered - my independence was gone!

From 2005 - 2009 I stayed much like that, sometimes improving so I could sit up more and then relapsing again. Education didn't help matters as I was pushed to do 5 one hour lessons a week, 5 GCSEs and at one point go into school for a lesson. In the end my parents put their foot down and I did just one GCSE which was still a struggle but I managed to do it.

From June 2009 - October 2010 I took a year out really. I did 2 classes at a local adult education centre in web design. And improved greatly! To the point where I could walk, go out occasionally and even though I still tired easily and had aches it was much better than it had been.

In October 2010 I started studying with the Open University, and although it was challenging I managed to stay quite well for til 2012. But a few factors then made me get worse again - I was unable to get the rest I needed when I needed it and pushed myself when I shouldn't have. This resulted in me suffering a relapse but I continued to study.

At the end of February 2013 after a severe throat infection, allergy rash which had kept me from sleeping, pushing myself to do too much and some troubles with my neighbours I crashed. I was bed bound for 3 weeks, had the flu as well. I couldn't stand light or noise, struggled to move without intense pain and slept lots.

I have now improved but am still badly affected.
  • I need help with getting dressed and showering again. 
  • I can't grip a glass so have to use mugs and even those have to be quite light or else I spill it!  
  • I am still sensitive to light and noise but not to the same severity. Saying that even a rustling crisp packet as someone opens it is too loud for me at times!  
  • Sitting up can be challenging as I get dizzy and feel faint very easily.  Some days I struggle to sit up at all other days I can sit up for short periods. I have the same trouble when standing. 
  • Standing and walking is challenging and a real struggle at times. Stairs are even more so, I often 'bottom shuffle' down as it feels safer. Going up my parents often have a hand on my back to keep me steady. 
  • Muscle weakness is a real feature and I often find I can't do simple things like open bottles, some doors (if they have catches on) etc. 
  • Joint and muscle pain is bad, ordinary painkillers take the edge off it on good days but have absolutely no effect on a bad day.  
  • Sometimes I cannot bear anything touching my skin as it's so sensitive, it hurts! 
  • I always have a slight headache but it varies depending on the day. The same can be said for a sore throat. 
  • I manage an hour of study spread over about 2 sometimes 3 hours and spend the rest of the day resting. 
  • I can't control my body temperature, although it can be hot outside I can be frozen under a duvet! 
  • I can't always sleep and when I do it's often unrefreshing - I wake up feeling like I haven't slept!  
  • Then there's the brain fog, poor memory, not being able to find the right word for things. 
  • And of course there's the unremitting fatigue and the simplest of things leaving me needing a rest. 
This is just my story. There are thousands of sufferers of this illness who will have similar stories if not worse. I am one of the lucky ones who hasn't suffered paralysis, needing tube feeding or been hospitalized.

Yet there are still many who do not believe that this illness is REAL. They believe it is all in our minds and that we CHOOSE to live like this. I don't know who would even consider that!! They don't know how much we WISH we could lead a normal life!!

On which note I shall leave you with a link to an article by Sonia Poulton on M.E. written especially for M.E. Awareness Week 2013.

And wow this has become a long post!! It's been written over a number of days and now I feel it is ready to be published!! Feel free to comment or tweet me @SmilingClare to let me know your thoughts.

I hope this has helped give you an insight into life with M.E. If you want more information on the illness please see the useful links on the right hand side of this page, or leave a question via the above methods and I will reply when I can.

That's All For Now Folks!