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. 







Saturday, 13 August 2016

Better late than never

In July 2013 one of my uni pals and I had tickets to go to an outdoor cinema close to home. At the very last minute I had to cancel, and by last minute I mean she's already started her hour-and-a-bit journey to see me. I was gutted. Properly gutted. I remember sobbing in the garden and handing our tickets over to Practically-older bro and his girlfriend s that at least someone could go and have a good evening. My health was making me cancel yet another plan, one that my friend and I had been so looking forward to it and yet again I felt I was being such an unreliable friend. Of course she was as wonderfully understanding and supportive as ever, but I was still crushed.

Fast forward to July 2016 and we tried again, booking tickets for the outdoor cinema held at Burghley House each Summer. And guess what?! We made it this time! 

It doesn't get more 'feel good' than watching Hairspray and Mamma Mia with the sun setting in the background, stuffing your face with picnic food, and sitting with one of your old housemates. If that's not a wonderful way to mark how far I've come in those three years then I don't know what is! 












Saturday, 30 July 2016

Bleak

In 2012 I started this blog and in doing so I had made the decision to share my journey through chronic illness with whoever came across it I the Internet. 

So I will share all of it with you; the good the bad and the ugly.

Yesterday was hard. It was perhaps only the 3rd time in almost 6 years that I have thrown in the towel. I'm not even sure you can throw in the towel when you're chronically ill. There is no escape. 

But I think I meant that I would give up the tablets. Give up the rehabilitation. Stay in bed all day through choice rather than necessity. I wondered what the point was; what was the point in prescriptions that only alleviate certain symptoms a tiny bit. What was the point of getting up when I had nothing to do and nothing I was able to do without suffering for it... 

I went back to bed to rest because I felt poorly and then suddenly I couldn't help but wonder what the point of my life was. I closed my eyes to try to sleep - something I have not allowed myself to do for years after working tirelessly to correct my broken sleep cycle. Even if I'm hit by nights of insomnia I don't catch up on sleep the next day. Waking up after sleeping in the day makes me feel very, very ill. But yesterday I didn't care. So what if I slept during the day and undid all that work? So what if I woke up feeling worse? I could just go right back to sleep again because I had no reason to get up. 

I cried a lot yesterday. Properly cried. My soul felt broken somehow, as if the years of finding the good in such a bad situation had taken its toll. I was done. I wanted to run away from it all - give those closest to me a happier life by not having to look after me anymore. I shut down on myself. Completely. I didn't want to talk to anyone, didn't want to ask for help, didn't want to see anyone. 

But there is something within me that won't let me completely give up. It's as if my auto pilot function is set to remain hopeful and strong and calm.

I didn't sleep - I couldn't shake the knowledge that I'd be so disappointed in myself if I did. So I got back up when I was physically able to. I had a shower. I washed my hair. I put on clean pyjamas. 

I find my own positivity and outlook infuriating sometimes. I just cannot seem to give up on myself. Even on those three, rare days when I have wanted to give up I have somehow managed to cling on. For that I am incredibly lucky. 

It is only natural that a person in my situation should have days like yesterday. How I don't have them more often is beyond me. 

And yet I have to do it all again today. And then tomorrow. And then the next day. 

Wednesday, 27 July 2016

Weigh Day Wednesdays

I am now 3 whole stone heavier than I was when my M.E. journey began in September 2010. Today that fact makes me miserable. Everything wobbles. Nothing is toned. My thighs and bum are covered in cellulite and have lost the shape they once had. I repulse myself if I'm being truly honest. I feel disgusting. 

Okay so I was lazy at uni and put on a bit of weight. Ironically it was joining the gym that seemed to be the final nail in the coffin for my apparently exhausted body and within a two weeks of starting my membership, my M.E. journey had begun. 

When you have few pleasures in life, chocolate and treats can be hard to give up. But I have cut down on them so much. Yet still the weight piles on. If I am fending for myself I do not have the energy (or the skill) to create healthy meals. Instead I can do frozen pizza, fish fingers, microwaveable ready meals. All dependent on if I'm strong enough to open the oven/microwave door. Toast is simpler and easier. 

Frozen peas are the only vegetable I can regularly eat. Broccoli upsets my stomach. Fruit can make me feel poorly. One day I can eat it okay and then another it causes pain and upsets my digestive system. In spite of my unruly digestive system I eat well. 

I have lost my jawline and my waist. The only area that hasn't gained anything is the area that needs it most! My boobs. 

My stomach looks like an upside down bowl has been placed under my ribs. I can't see my feet when I look down and I am surprised that no-one has asked if I'm pregnant. I'm not. 

I am embarrassed to show any skin above my knees and I cover my arms with a cardigan even in sweltering heat.  

It's the lumps and bumps that get me, not the number staring back at me when I stand on the scales. At the time of writing this I am 14 stone and 4 pounds. I am 5'7 so I feel 'big' already.

I don't want "insightful" comments about how they're just numbers and the right clothes size is the one that fits. I feel fat. I miss exercise - and by that I even mean just simply being able to wander and walk around more.


So I have started my own little Weigh Day Wednesdays in the hope of keeping track of things. I have my little weight loss pom poms - each one representing 1 pound. 

If nothing else watching what I eat is giving me something to do ha ha! 


Monday, 11 July 2016

The Adventures of Anna Jones - One Happy Camper!

To say you are going camping when you're not very well is probably a tad ridiculous. For someone who's internal thermostat is most definitely broken to decide that sleeping outside in a tent with nothing but a sleeping bag to keep them warm seems rather silly. Add to that the fact that light and sound can and do induce pain, malaise and nausea, well it just doesn't sound like a good idea at all does it?

Yet I did it anyway! 

My parents and Mr Tree Surgeon took me up to East Yorkshire for the weekend in the hope that we might spot some nesting sea birds in the cliffs at Bempton. 

Slightly larger than your average two man tent...

You may already know that car journeys are tricky for me, as they are for so many M.E. sufferers. It isn't just travel sickness that we have to contend with. The stuffy car, the upright seats, the struggle to process the images that blur past the car window, the being unable to have your legs up to avoid feeling faint, the unexpected delays if you hit traffic... It don't think I'll ever be able to accurately convey how it feels for me. And yet sometimes I manage just fine! Truth be told I haven't even considered the journey; I was concentrating solely on the staying in a tent bit! 

After two and half hours in the car we all arrived at the camp site safe and sound. I perched myself on my mobility scooter and watched as the tents were put and secured. I elected myself Chief of Guy Ropes and shuffled my way around securing them into the ground. As strength is not my forte anymore Mr Tree Surgeon did have to follow me round double checking my work.

Even when you can't walk far, you must at least
look the part and wear walking shoes!
Home for the weekend

We were camping with family friends and they were kind enough to lend me one of their fishing bed chairs because the consensus was that my poorly self would not manage a wink of sleep if I was laying on the cold ground with just a roll mat or two for comfort. This bed chair was SO comfy and both nights I slept incredibly well in my shiny new all-purpose sleeping bag. Mr Tree Surgeon was happy enough to slum it on the floor next to me. 

Ominous grey clouds but we avoided the worst of the weather

For some reason it hadn't entered my mind that there might be other campers around. I had it in my head that we could pitch up wherever we liked and even I would be able to walk the short distance to the toilets and shower block. Bless me! In actual fact it was jam-packed and I had to use the car each time I needed a wee. I didn't care what the other campers might think of this until the last morning when, struggling to walk after just waking up, I shuffled from the car to the toilet only for one woman to openly laugh at me right in my face. I wasn't awake enough to explain myself and had to settle for her assuming I was lazy and/or drunk at 8 o'clock in the morning. 

Poorly person essentials
The mobility scooter paid for itself over the course of the weekend. For the first time in almost six years I didn't have to stay behind while everyone went off for a walk. I managed to scoot across bumpy fields right up to the coastal path that allowed you to get the best view of the nesting birds. Everyone helped me clamber over the style and then Mr Walking Stick and I joined everyone for a 'short' walk, flanked on all sides in case I took a tumble and fell off the cliff!!! 

PUFFINS!
My poorly, exhausted legs got me maybe
200 metres along this path to see the birds

I obviously didn't manage all of the walk but it was undoubtedly the longest, loveliest walk I've had in years and years. Everyone was over the moon for me! Not only had I managed to sleep in a tent, I had been able to come along and get some fresh air and stretch my legs. For my parents to see that... It really hit home when my dad commented on how not so long ago I had been unable to walk to the toilet from my dining room bed. What a difference a few years have made. 

Fluffy chicks!
Mr Tree Surgeon and I then mobility scooted back to the car and he drove me round to meet the others at the end of their walk at the RSPB Bempton visitors centre. We had a scoot around there too and I may have had a little happy cry when I looked back to see how far the scooter had allowed me to get. Never would I have managed such a walk. 

RSPB Bempton Cliffs

When it was time to go home Mr Tree Surgeon and I attempted to set down our tent by ourselves, as a practice run for when/if we ever go camping by ourselves. I did it - with a rest in the middle and him doing the hard bits! So it's looking good for future camping adventures. Another thing I never, ever dreamed I'd be able to do again. 

Tuesday, 28 June 2016

On Tuesdays we try to be Chipper

There is no doubt that this a cruel illness. 

For every inch it takes a mile. Every. Single. Time.

Alas it is Tuesday and on Tuesday we search for things to be chipper about. 

Four years ago I had a routine letter from my optician telling me I was due for an eye test. Pretty standard stuff. Yet I was incredibly, incredibly poorly. So much so that a twenty minute eye test would count as my month's exertion. My mum went into the opticians a few times before my appointment(!!!) to explain my circumstances and to let them know it was likely I wouldn't be able to do the whole eye test in one go. We still laugh about her making a nuisance of herself! "Just to let you know (again) that my daughter has an appointment next week with you and she's not very well..."

The appointment was hard and long but we managed it together, going back at a later date to choose my new glasses rather than trying to do it straight after the appointment as you usually would. 

Two years later and I had made enough progress that my mum didn't have to go in several times ahead of time to 'earn' the opticians that I was poorly and had a complex and low energy supply. She made my appointment for me again and escorted me there and back. 

Fast forward to June 2016 and I was able to phone to make my own appointment for the first time since The M.E. Years began. You might be confused about why such a small and trivial detail is worthy of being mentioned, but phone conversations are so hard for me. My brain can't seem to process the conversation very quickly or very well (perhaps without the help of lip reading and body language.) 

Not only did I make my own appointment but I drove myself to it!!!!! Alone!!!! I survived 40 minutes in Specsavers by myself; a huge contrast and improvement from that first appointment four years ago. It was not easy but my health held out long enough for me to shuffle in and out on my own, talk coherently to the staff, sit through the eye test, stand long enough to choose a new pair of glasses (along the lovely team did offer me a chair), and remember my PIN number when I had to pay! 



That my friends made last Tuesday a Chipper Tuesday!