Sunday, 13 November 2016

Normality

All I've really, REALLY wanted for the last six years has been a bit of normality; a bit of the Real Life that I'd lived for 21 years but I couldn't be a proper part of anymore because even leaving the house for an hour would have a chain reaction on my health and write off the rest of the week or month. I wanted to do normal things like watch television without it setting off the nausea and sensory overload and therefore leaving me bedridden again. I wanted to be able to see my friends and my cousins and my siblings whenever there was a get-together. I wanted fun. I wanted independence. I wanted spontaneity. But mostly I just wanted to be normal, to be like those unrestricted healthy folk, and to be like the girl I was for 21 years.

Last night I got to do one of the most normal things of all; celebrate my birthday at a restaurant with some of the most important people in my little world. And it was masterminded by a man who has taught me to love myself at a time when I felt the least loveable. A man who chose me. A man who's given me so much of the normality I craved, only to find out that what we have together isn't normal at all; that normal doesn't do it justice. He told me we were going out for an early-birthday meal but when we got in the taxi I learnt that a 'couple' of my friends would be there to join us. I'd had NO idea. And I consider myself to be quite hard to surprise! 

Mr Tree Surgeon is camera shy so this is the best I could get!

The people around that table will all know that that's a big deal for me and that it means so much. But it all means more than I can put into words.

I have a skewed impression of myself and my self worth now. It wasn't only my health that I lost back in 2010. But with the help of the people round that table, and more besides, I am learning that the core of me is still the same. And I'm still worth giving up a Saturday night for, worth going to all that effort for, still worthy of friendship and love.

It wasn't just a surprise meal out, it was all I've really wanted for the past 6 years. 




Friday, 11 November 2016

Periodic Paralysis?

Although it's been some time since I mentioned it, you may remember that I am currently on a quest to see if I have Periodic Paralysis on top of the usual and delightful M.E. symptoms.

London Calling
The National Hospital of Neurology and Neuroscience

My Wonder GP referred me to the National Hospital of Neurology and Neuroscience after I flippantly mentioned to her that I still have periods where I become 'stuck' and cannot move or speak. As an M.E. sufferer you are largely, if not wholly, left to navigate this new path through life on your own and without medical help, advice or intervention. Therefore I had come to see these episodes of 'paralysis' as normal and just another symptom to add to the already extensive list.

Alas, my Wonder GP seemed horrified to think that I was experiencing these bouts of what sounded like Periodic Paralysis.

So off I went to Queen's Square, London for a day of godawful tests.

My follow up appointment in August was cancelled by the hospital and a new one was made for me for October. It became clear that I wasn't well enough to travel to London (awful place at the best of times!) and get across the City to the hospital. So Mr Tree Surgeon phoned and asked for the appointment to be held over the telephone instead. Huzzah!

I spoke to a different neurologist from the Muscle Channel team to the one I saw back in February but this one was equally as nice. It's always such a lovely surprise when medical professionals treat you kindly as an M.E. sufferer!

To cut a long story short, my test results aren't back yet. Infact my samples haven't even made it to the lab. Yet I refuse to feel frustrated at the NHS or speak badly of it. We have no idea how lucky we are to have such a system. My results will hopefully be ready by the time I have my next appointment in May 2017. Again it will be over the phone.

At this stage we are still unsure if I 'fit the bill' for Periodic Paralysis. The fact that I can never speak during my 'attacks' means I am not a "classic case". I can also swallow a sip of drink if someone puts a straw in my mouth, which again isn't something that's considered to be typical.

So we wait and I continue to ride the wave.

The most wonderful thing to take away from this appointment though is that the doctor was genuinely confused and concerned that I have received no treatment or help or support regarding my M.E. since I was discharged from the CFS/ME clinic in 2012. I informed her that that was quite normal and that really there is no proper help or treatment yet. But her concern will stay with me for a long time and perhaps means more to me than the test results will.

Monday, 17 October 2016

Biting the bullet

My name is Anna Jones, I am not yet 28 years old, and I have just applied to have an Adult Social Care Assessment. 

This is quite far away from how I imaged life would be. Just 10 years I was winning awards for 'sporting prowess' at school. I'd been netball captain for 7 years, won nearly every event I entered into on Sports Day, was put in for every sports team going even if I'd never played it before. 

I got my first job at 15 and worked several different part-time jobs right up until my health suddenly disappeared aged 21.

When I was at university I could pull an all-nighter with the best of them; going out with friends and coming home in the early hours to finish the essay that was due that day. 

Now I cannot prepare meals, fold washing, or even shower everyday. I cannot always get out to collect my prescription or simply to get a blast of fresh air. I cannot unload the dishwasher or hang up the washing. I cannot do these things and so Mr Tree Surgeon has to do them when he gets home from sometimes an 11 hour day or climbing up and down several trees in the pouring rain. Last month he started a new course to gain a new, exciting qualification. He will be busier than ever for the next 12 months. My mum comes round to help me when she can as it is, but I want her to be able to be my mum, and not my cleaner. I want Mr Tree Surgeon to be my boyfriend, and not my carer. A lovely friend of mine has offered to pick up the slack until I have sorted out some proper help. She is coming over again this week to unload the food delivery and prepare a meal. It feels so strange that I, Anna Jones, need such assistance. 

Today I used what little, precious energy I have to ring up the local council and ask for help.


The woman on the phone was so lovely. She was sympathetic and that seemed to break my heart even more; that my situation is worthy of sympathy. She has opened a record file for me and the social care team will be in touch to come out and see what help I need.

To have to list off the things I struggle with, and to look so closely at, and think so hard about each and every symptom and how they make my life as hard as it is...it hurts my heart.

I know I need this help but that fact alone crushes me. 

Wednesday, 5 October 2016

Getting over myself

I have banned myself from doing any housework, even though each little bit I managed was cause for celebration. A couple of weeks ago I had an almighty panic attack out of the blue, as you may have read in Outpouring.


Since moving out of my parents care I have been piling the pressure on myself to do x, y, & z. When I had the energy I would spend it on unloading the dishwasher or putting on a load of washing. I'd even try to hang it out when it was done. 

So I am sucking it up and taking a step back. I've accepted help where it has been offered and I am so lucky and grateful that I have people in my life who will do whatever they can to lighten my load. And all without thinking anything of it. 

My energy is so, so precious and I have been wasting it on having a clean and tidy home. Even with the help of my mum popping by to whizz the hoover round, I have been taking on too much. 

It is quite hard to step back because I have actually enjoyed being able to do things around the house. It's something I wasn't well enough to do for such a long time and the feeling of being useful should not be underestimated. Changing the bed, for example, was something I hadn't been able to do for years and so I loved that my arms were strong enough again to do something as ordinary and mundane as put fresh sheets on my own bed! By myself!!! 

Yet I wasn't leaving enough of my precious energy to do lovely things. There has been no sewing, very little reading, hardly any socialising, and my little driving adventures have completely stopped. I seemed to think I should be doing it all and although I wasn't forcing myself to do these things around the house, I was definitely putting pressure on myself to use my energy in that particular way. I am not Wonder Woman. I am still very ill. Just because I've been well enough to leave home doesn't need I can run my own house in the way I'd thought I would be able to. And that's perfectly fine.

Asking for, or accepting help, is all a part of coming to terms with the limitations of my life with a health condition as severe as this one. Accepting M.E. is vital to move forward and live but my goodness is it hard. It is a process that comes and goes. It is not a constant. 

I don't need a Carer as such. More a helper who can hang up washing, put my clean clothes away for me, do the online weekly shop. 

I have the luxury of having people in my life who will come and take the slack. I just have to be brave enough to let them do that and learn to let go of the guilt. 

I can't tell you how hard that is. 

Monday, 3 October 2016

Away Days

I have been fortunate enough (or perhaps foolish, when you think of how exhausting my body finds being out of its comfort zone) to have had a few little holidays crammed into the last few months. 

I don't need to be told how lucky I am to have been able to manage such a mean feat. Nothing gets my back up quite like someone else pointing out how lucky another person should feel. No-one truly knows how lucky another is. Anyway, yet again I digress. 

As so many of my poorly pals have not had the pleasure or opportunity to see the sea in quite some time I wanted to share some of my holiday photos with them, via the blog. So here they are.

Cromer and Heacham, Norfolk
A few days away with my family



Ashbourne, Derbyshire
A few days away with Mr Tree Surgeon's family


Barnsdale, Rutland
A few days away, only 10 minutes from home, overlooking Rutland Water.


This is always a rather reflective week for me. The first time we came here in 2011 I was incredibly poorly. I say under a blanket unable to do anything more than 'just be' for the entire week. 
This year I have made it to the onsite bar for coffee already! 

Monday, 19 September 2016

Outpouring

I will be frank. Last night I had an almighty panic attack. I haven't had many of them before and they are only something I have experienced since being ill.

So today I am frail and fractured and fragile.

I felt it coming, so much so that I told Mr Tree Surgeon before it hit me "I think I might have a panic attack." Yet it wasn't a choice. It just came. And boy did it come. 

My face and arms went completely numb. My jaw locked. It was incredibly physical. I couldn't breathe properly. My temperature fluctuated. 

And then the tears started and they wouldn't stop. 

I was conscious that Mr Tree Surgeon had a big week at work ahead; that he needed his sleep. And yet he couldn't get it because I was in quite a state. I started to worry it wouldn't stop. I wondered if I was mad. I knew I must look awful with tears and snot and sweat everywhere. And so thinking about all of that made it worse.

I'm not sure why it happened or whether there was a trigger. But I wonder if I have been becoming a little overwhelmed by life recently. Something as simple as the online food order feels too much for me. What if forgot something or order the wrong quantity or the wrong brand? Silly things that suddenly feel incredibly important. I worry about how socialising is always such a bitter sweet experience; wonderful yet likely to make me very ill afterwards. I worry about being too 'busy'. That I have so much to do and so much going on. I worry about being 'enough', about pulling my weight around the house, about being a flakey friend. I even worry that my wonderful progress will lead people to think I am fully recovered; that I have to prove otherwise. That my benefits will be taken away because of that progress even though I am still incredibly unwell. I feel under pressure but the only person putting me under pressure is myself. 

Yesterday should have ended in celebration. I made it to my dad's birthday gathering at my parents's new house and lasted two and half hours! But perhaps that's what got me in such a pickle. The house was full. I didn't know who everyone was and I think I felt rude that I didn't have the energy to socialise and chat and introduce myself to the people that were there. I hid myself away in the corner or outside behind the chicken coop. And yet I had been so excited to go and to be able to go. And eager to see all of my parent's friends who I've known nearly all of my life. But I wasn't as well as I'd hoped I would be and so my energy levels wouldn't allow me to be myself. I left early and felt embarrassed and shy at having to interrupt my own dad while he was chatting in a large group to tell him I flagging and so Mr Tree Surgeon was taking me home. And I held it all together until I got into bed and then it got to me. 

Today I have been hit with the usual post-exertional malaise (PEM) that comes after every and any activity when you suffer with this particular health condition. I have an incredibly fuzzy head and feel groggy and spaced out. Yet I can write this which shows how much I've improved over the years. (Ever the optimist?) My arms are stiff and sore and heavy and 'empty'. I am typing with two fingers. On top of the PEM I feel incredibly vulnerable somehow. 

I have made a little fort for myself on the sofa. I would have stayed upstairs but I was worried the doorbell would ring when the postman came and I wouldn't be able to get there in time, which would then lead me to panic again. Another case of making a mountain out of a molehill perhaps. I can't find the words to expand on that right now but it's something I must revisit as since moving out of my parent's care and essentially into my own home I have noticed how I put myself under pressure to do the things I feel a young woman should be able to do in her own home. How silly to do that to myself when I am still so poorly. Yet I do. 

The cavalry have been called once again. My mum is calling in after work and my dad is on standby ready to come to me at the drop of a hat. 

I need lots of TLC today. I am scared that it might happen again. 

Saturday, 10 September 2016

The girl who was

Today, the 10th September, marks 6 years since the start of my M.E. Years. 

And it doesn't feel as bad as I thought it would. 

To say that life has not gone as I thought it would seems somewhat of an understatement. I have long forgotten what it's like not to wake up poorly and exhausted every single day. This is my normal now. 

I still see this journey as a life changing experience. Few people get the chance to have one of those; be it good or bad. As a family, we still feel that if M.E. was going to strike, it did so at the 'best' or most convenient time in my life - after school and university, before full-time employment, and when I had moved back into the family home after university. It all could have been far, far worse. 

I have spent some time this week looking back over the last 6 years and trying to remember the girl I was; that 21 year old History graduate who was working at my parents Summer Camp, lining up interviews and researching different careers. 

The girl who was - 1 month before M.E.
Regardless of my health, that girl would have been long gone anyway. Life is transient and while I cannot imagine what it would be like not to have M.E, I am certain that it would have changed in some way from the life I had as a 21 year old, because that's just what happens. 


The girl who was - 3 weeks before M.E.
Looking back through my photo albums of the last 6 years I was immediately struck by one thing - I look so happy in each photo. Even the ones that have been taken of me during The Dining Room Days and my days stuck in bed. That's not to say every day was happy and jolly. But hand on heart I think there was something good about every single day - even if that something was as trivial as having an Internet connection so I wasn't completely isolated from the world.


A mix of pre-diagnosis days, Dining Room life, and wheelchair adventures
Post haircut - to allow myself to maintain an ounce of independence in washing my own hair
Still all smiles - even in spite of the neurological symptoms that meant I needed to 'protect' my head with a hat

Early on I noted that I would see these life changes as a comma in my life story and not a full stop. And now I feel that perhaps these years of illness can be compartmentalised further into chapters. Several chapters in fact. Just as every life is. So while they have become The M.E. Years perhaps now, six years in, it is time to stop calling them that. For I believe my health will never be what it was - in the same way I will never again by a toddler, or go to Primary School, or sit my GCSEs, or be school netball captain, or deputy head girl. Those things are gone. 

Maybe now I will start to look at life as not The Healthy Years and The M.E. Years. Perhaps this current chapter will be called The Time I Became Well Enough to Move Out of My Parent's Home..

If I have M.E. for the rest of my life, which I may or may not, that is okay. I'd rather I didn't have it but it is out of my hands, and we must make our peace with that now. My point is that it would not be wise to dismiss or reduce these years down to being just The M.E. Years. Instead, I hope that there will be hours and days and weeks, and hopefully even months, that will become chapters in my life in their own right - independent of the constant health battles that I may or may not face. 

I think it will be hard - it involves me viewing myself as more than my illness, which is something I struggle with because of the huge impact my health has had/still has on my relationships, hobbies, activities... It can be a living hell. It is a nasty, soul destroying, all-encompassing illness...

But I am going to make a conscious effort. 

You must understand that this will all be easier said than done haha! 

So, 6 years ago today I sat in an opticians assessment room and we tried to work out why my vision had suddenly become out of focus and blurry despite my prescription being correct. And then my best girl pals and I had, what would be, our last night out together before I disappeared from the life I'd known for 21 years. 10th September 2010.

6 years ago to the day. That final night out.

Within weeks I'd have seen several doctors and received no answers. Within weeks I had had to quit my part-time job, move my bedroom downstairs to the dining room, stop driving because I physically and cognitively couldn't do it, cancel job interviews. Within weeks I could barely walk. 

Yet here I am, 6 years in, getting the chance to do things in life for the first time again - use the stairs, read a book, dress myself, wash and style my own hair, go to the Post Office BY MYSELF(!!!)

I think that makes me quite lucky actually. 

Almost 6 years in at this year's Blue Sunday fundraiser

Wednesday, 7 September 2016

Those Dining Room Days Revisited

Today (apparently) marks two whole years since my last stint in the dining room. 

If you've only recently joined my 'M.E. myself and I' journey this may well mean absolutely nothing to you, but quite simply, there was a time during the last few years when I was too unwell to walk up or climb the stairs. Crawling was beyond me too. I just did not have the physical strength to do it. 

And so a bed was set up for me in the dining room. More than once.

Anna vs. The Stairs

The onset of my M.E. was incredibly quick. How ironic for an illness that essentially turns you into a sloth and leaves you living life in the slow lane. The first time I found myself setting up camp next to the dining room table was way back in October 2010. In 'The Beginning' as we've come to call it. I was there until Christmas time I believe and then I was able to return to my lovely bedroom upstairs.

In the Summer of 2011 however I found myself back downstairs and for much longer this time, although the dates escape me. It came as a crushing and disheartening surprise, although I know by now that there is often no rhyme or reason for the things we must endure with M.E. It was at this very poorly time that we decided to cut all of my hair off to allow me to keep a tiny bit of independence and not have to have someone wash my hair. Anyway, I digress. 

The third and final time I needed to be in my makeshift dining room bed came it August 2014, almost four whole years into my recovery journey. Looking back at my own blog posts of these times I can see a change in my attitude and how much I had already learnt about myself and my 'new' ill-heath. 

It is not a case of being proud of oneself, although I can't deny that I am. It is not a case of grit and determination; at keeping myself from using my dining room bed. It was essential. It may well happen again. For now, though, I shall celebrate having two whole years of being able to use the stairs in whatever way I need to - crawling, shuffling, sliding, hoisting myself up, being pushed or pulled or carried, or simply climbing by myself with the help of the handrail.

Some days it is still incredibly painful to do so. Some days it takes hours to build up the energy to climb that wooden hill. Some days I can't do it on my own. Some days my legs cave in half way up. But I must look back and remember that there was a time when it was actually impossible to even get onto the first step; for my legs were too weak to lift my feet to the height needed to do so. 

Progress is possible. And I am continuing to make it. 

Thursday, 18 August 2016

The perceptions of others

I am a bit nervous to go home today. It feels a bit silly to feel like this. But the other day, when the postman was ringing our doorbell & I was too poorly to get out of bed to answer the door, I overheard the woman next door say something about me in a tone that was most disapproving. 

In the end I somehow got to the door on the postman's third try - but that exertion wrote off the rest of my day because my body hadn't been ready to move yet. 

Our neighbours either see me through the window in my pyjamas lying in the sofa, or they see me dressed and walking the two metres to the car. Sometimes I drive, sometimes I am the passenger. 

They must know by now that I do not work. Perhaps they wonder if I work from home. We have never chatted with them for long enough to tell them about my health. Yet I worry now that some of them may have made assumptions about me, because of what I overheard through the bedroom window the other day.

Rightly or wrongly, I feel ashamed and embarrassed to say that I have M.E. It is a label that does not evoke the 'correct' response in most people. The word 'tiredness' is the only word that springs to most people's minds when you mention it. Some go as far as mentioning the words mental illness and psychological. My heart sinks every time. 

The stigma attached to those two letters M and E is something I have spoken of often but to live with the knowledge that the majority of people still do not understand the severity or complexity of this illness can be quite disheartening and damaging.

I am sure that our neighbours have seen us go out on my mobility scooter or putting the wheelchair in the boot of the car. Yet it must confuse them to then see me appearing to be perfectly 'normal'.

My health fluctuates. At the moment it is mostly at the lowest end of functioning but for the most part I can alternate between 'good' days and 'bad' days throughout the course of a week. 

Invisible illness is tricky. I understand that. I also understand that if this hadn't happened to me I would probably be none the wiser to the battle that sufferers of invisible illness face. 

So I am nervous. Nervous and worried about the perceptions of others. Everyone says that I'm not to worry; that I have nothing to prove - that I know how poorly I really am and those closest to me know it too.

But letting go of this worry is so much easier said than done. Nearly six years in and I still feel like a novice at times like these. 

Wednesday, 17 August 2016

Setback City

I often think that this chronic illness life is harder for those on the outside; those who have to watch us suffering and care for us as best they can, all the while knowing that they cannot cure us or make the illness go away.

Those of you who follow my Instagram account will know that I am currently in Setback City. It's definitely not a relapse - if it was I would be back to having to sleep in my parent's old dining room and having to be wheeled to the toilet. But it's also not 'just' a crash or post exertional malaise - it's definitely worse than that and has already lasted a good few weeks. Still, it's all 'normal' and par for the course with M.E. 

I am being very well looked after, just as I have always been. Yet I am conscious of the effect this worsening of my health has on those who have to pick up the slack. I do very little to help around the house anyway but at times like this I am unable to even make myself some toast or a cup of coffee. I cannot currently drive or even leave the house easily. For every little thing I do there is payback. I'm not able to read my books at the minute or watch much television. 

In the same way that my parents always did, Mr Tree Surgeon takes it all in his stride and insists he doesn't need or want any 'time off' from looking after me, but I feel it is important to look after him and give him a break from it all like I used to try to do for my parents. Every once in a while I would go and stay the night with Not-so-big Sis for 'Respite Care'. For my parents it meant a night off from cooking for and feeding me. A night off from feeling nervous and worried while I took a shower incase I became unwell while I was in there. That kind of thing. 

Last week Not-so-big Sis came over to cook for me so Mr Tree Surgeon could go out for a meal with friends as planned. Why should he have to cancel plans just because I need babysitting? I'll never forgot the feeling I had when my mum had to miss a wedding because I couldn't be left on my own...

So I have come for a little holiday with Ma and Pa Jones at their new house. It's a change of scenery, a different sofa to lie on, a different garden to sit in... And it's all on one floor which is always good when your legs are so weak and almost too painful to use! 




A home from home.