Thursday, 29 August 2013

Labels

Today I am not an M.E. sufferer. I am just a girl looking out to sea. I am just a girl watching the people walk by and wondering what their story is. I am just a girl squinting at the sun and smiling as it warms my aching body.

Today I am not an M.E. sufferer. I am just a daughter who went with her parents to sit on the beach. I am just a girl who felt the sand between her toes. I am just a girl who was as delighted to be paddling in the sea as the young children with their buckets and spades were. 

Today I am not an M.E. sufferer. I am just the young woman sitting in the window reading a book. I am just the young woman curled up on the bench drinking coffee when it really isn't warm enough to still be outside. I am just the young woman who people might say is so lucky to be staying in that yellow house up there on that cliff. 

Today I am not an M.E. sufferer. I am just the delighted friend writing the Congratulations card to my friend who has just got engaged. I am just the delighted friend sending a text message to my friend who is getting a mortgage so her boyfriend. 

Today I am not an M.E. sufferer. I am just Anna who loves nothing more than to be by the sea. I am just Anna who loves the feeling of being here right now. I am just Anna who loves this feeling of contentment despite knowing that it won't last forever. 

Today I am not an M.E. sufferer. Today I am just happy.



Friday, 23 August 2013

Summer loving

Let us ignore the bad and concentrate on the good for this week.

My Summer hasn't been so bad. 

Comfy and cosy
It's been about investing in comfortable garden furniture and then 'bed days' outside on said garden furniture because my attic bedroom was like a sauna. To make sure I stayed in the shade I've also become a Homemade Parasol Construction Specialist. Why buy one when all you really need is a mop, a broom, a rake, a large tablecloth and LOTS of masking tape? Revolutionary. 

Paddling pools and parasols
I also bought myself a paddling pool because sticking my feet in a bucket of cold water just wasn't cutting it. So there I was, only a few months away from my 25th birthday, splashing around in the garden on sunny days. Who said money can't buy happiness?! 

Introducing my Practically-Older bro and Chief Decorator/Flat Pack Putter-Upper
This Summer has been about getting back to driving, having my room repainted, going out for lunch with some of my lovely friends, being able to read and listen to music on some days, sitting in the garden and getting a bit of a tan for the first time since pre-M.E times; a very good sign I think. And of course Operation Ice Cream. 

Going Green
This week, as I seem to be coming out of the other side of my recent Magnesium-induced setback, I managed a trip to the Summer Camp site around the corner. I met some staff who I didn't know and they didn't know me either. It felt beyond wonderful to chat to these people as 'Anna who used to work here' rather than 'Anna with M.E.' or 'Anna the poorly one'. My eyes got a bit watery and my voice a bit shaky when I told my family how wonderful that felt; to just be Anna.  

Summer Loving

Saturday, 17 August 2013

Stigma

I am developing quite a large chip on my shoulder and it is all your fault. Well society's fault really but let's not waste time splitting hairs. If I was reading this out loud I might get a bit 'shouty'. 

If I didn't have the 'M.E. label' medical professionals would surely be at least starting to think that my health might not be the best after three years of suffering and stalemate? 

M.E. sufferers have such a bad name. 

The symptoms are horrific but the stigma is almost worse. It feels like trying to convince someone that your hair is blonde when they're telling you it's actually black. You even start to doubt yourself despite being able to see in the mirror that your hair really is blonde like you're telling everyone. 

Sometimes I feel ashamed to be an M.E. sufferer. I think a lot of us do, and all because of the stigma. But the ones who should feel ashamed are the doubters; the ones who don't even try to understand; the ones who don't believe you or trust that you're telling the truth. They are the ones who should be ashamed. 


To them I say this:

You don't see me when I am too weak to lift my head up. 
You don't see me when my legs shake and my knees threaten to buckle for no other reason than I have walked downstairs. 
You don't see me when I have to clutch the back of my head to try to stop the 'itchiness' underneath my scalp. 
You don't see me when I struggle to chew food because my jaw isn't strong enough. You don't see me battling the after effects of even five minutes out of the house. 

You don't see me and the heartbreak me and family face everyday because of this illness. 

You don't see the changes in my family dynamics. 
You don't see my Mum spending hours filling in benefits forms trying to prove just how poorly I really am. 
You don't see her trying to put this 'plague' into words. How can you describe such awfulness coherently? 
You don't see my dad having to give me what can only be described as an 'air hug' because to give me a real hug is too exhausting and painful for me. 

You don't see my brothers struggle to find the words to comfort me when I am stuck in bed and having to cancel yet another outing with my friends. 
You don't see the look on my sister's face when she walks into the room to see my limp, weak body laying on the sofa barely able to sit up. 
You don't see the frustration and sadness on their faces when they ask me if I want to do something only to hear that I am once again not able to. 

You don't hear the wobble in my grandad's voice when he tells me all he needs to be happy before he dies is for me to be better. 
You don't see my heart sink when I hear him say it everytime I see him. 

You don't see the upset I face when having to visit my GP surgery. 
You don't see me fighting back the tears when I am told by these medical professionals that it 'really is time to snap out of it now, if not for [me] then for [my] family'. 
You don't see how bad that makes me feel; to be accused of 'milking it' when I would do anything, give anything, to be healthy again. 

                                                        ___________

If you know my family and you are reading this, I almost hope that you feel a bit ashamed of yourself. When was the last time you asked my family how they were coping in all of this? 

Please do me a favour and ask my parents or my brothers and sister if they're okay. 
Simple as that! M.E. has not only affected me but them too. Maybe even more so. Come out of the woodwork and look after them like you did when another family friend was seriously ill with leukaemia. Illness is illness whether it's cancer or MS or chronic pain...or M.E. Who are you to decide whether one is worse than the other? My family have been suffering for three years. Three years of watching their daughter and sister struggle to walk and eat and move and speak and function. And all without being taken seriously by the medical world. Imagine that for a second. Imagine if this was your daughter/sister...

Spare a thought for the sufferers and their families who have endured many more years of illness and stigma than me and my family have. 


Don't you dare judge us M.E. sufferers. If you don't or can't understand then fair enough. It is so complex that even we sufferers struggle to get our heads around it. But don't you dare judge us or smear our name and our illness with rumours and presumptions. 

If someone asks you "What is M.E?" and you don't know how to answer, that's fine! Just don't make something up. Just be honest and say you don't know.

"All I know is that my friend is very ill with it" would be a much better response than pulling something out of thin air. 

Wednesday, 14 August 2013

Staying grounded. Literally.

There are times when I am so poorly that I feel I need to slither onto the floor. I don't faint. It's almost a choice, but at the same time it isn't a choice because I feel the floor is the only place where my body can get some relief. I'll put my feet up on a chair as I lay there on the cold, kitchen tiles.

I find it almost 'comforting' lying on the floor. When you're on the floor there is nowhere to fall. I can allow my body to sink into the floor and try to relax. I've developed a bit of a fear of falling and fainting. You see my balance isn't always great and I feel faint quite a bit. But it isn't that fear that makes me lie on the floor. It isn't some kind of voice in my head making me do strange things. It's hard to explain but the only reason I lie on the floor is because I feel too poorly not to. I don't know if I'm making sense... 

My energy supply seems to reach an all time low very suddenly. It's time like that when I feel the need to eat and eat to get some kind of energy boost but it never comes. Never. I feel so weak and have to lie on the floor because I can't support my own body. Gravity is too strong. During these poorliest times, my body is so weak and my muscles so redundant that I shake to the beat of my heart; my whole body moves with every beat and I'm not strong enough to stop it and be still. This is gross but I'll share it anyway: I tend to leave behind a sweat patch on the floor because the cold sweats can be that extreme.

It doesn't happen all that regularly anymore. Very rarely really. It used to happen much more regularly in The Beginning. I'd often find myself on the bathroom floor mid-teeth clean...

It is a horrible feeling. I just lie there trying and willing myself to stay calm. Despite what my body is trying to tell me I'm not actually dying. This must sound silly but trust me when I tell you how real it is. It isn't in my head. I'm not pretending. This is real and it is awful and scary and not at all how I imagined I'd be spending my time. When it happens when I'm home alone it's not nice at all. It used to happen regularly and I'd have to patiently wait there, on the floor, until I was strong enough to crawl to the phone or use just my arms to drag my body behind me because my legs had gone completely floppy and dead. Imagine that. This isn't a game. This isn't for effect or for fun or to be a Drama Queen. This is my life. 

Medical professionals would no doubt have me sectioned for such odd behaviour. Perhaps if they did some proper research and gave us proper treatment I wouldn't have to resort to such 'extreme' measures to make it through the day. 

Thursday, 8 August 2013

Malicious Magnesium

So I am in the midst of another setback. Lucky me. I won't lie to you, this is hell. They always are. Alas, a silver lining has been pointed out to me by my beloved family. This is my 'best' setback yet. I'm not convinced but according to them it's miles better than where I have been before. For starters, I can take my own arm out of my cardigan sleeve without having help. I've also been able to feed myself. Oh joy! 

But this time it isn't just M.E. who takes the blame for this current state of wretchedness. 

A while ago I told you how, after reading Dr Myhill's paper, I had started taking a list of supplements. Sadly I found myself feeling much poorlier and so stopped taking the, again. I've been reintroducing them one-by-one. Vitamin B12 first. All fine. Vitamin C. All fine. Green tea supplement. All fine. Magnesium. Definitely not fine. 

So after a horrendous Friday last week (which we now know is down to the magnesium I'd started taking two days before) and the pain (both physically and otherwise) of having to cancel Saturday's plans, and then Wednesday's plans too, here we are a week later and things are still very much the same.

Chewing food is exhausting. I had a coughing fit yesterday morning that has left my core muscles feeling bruised. My head feels full of water and my neck is struggling to keep it up. This is constant. There is no break from it, instead I get a wave of increased awfulness, where my temperature rockets and my heart races for no apparent reason, every half an hour or so. The tremors or shaking, probably from 'exertion' are becoming ridiculous and consuming. They're the worst I've had for sometime. The dizziness is far from pleasant. I dare anyone to tell me, at this very moment, that M.E. is "just tiredness". Or how "everybody feels like that sometimes". Or how I can't possibly be THAT ill if I can still write blog posts.

There will be no driving or baking or going out to see friends. And there will definitely not be a repeat of Operation Ice Cream. There will be few days where I can manage a shower or to make my own drink or use the stairs more than once a day. My walk is no longer the walk I've spent months and months building up to. Instead it has returned to the shuffle it was back in September 2010. Between me and you I've only managed one (mobility-aided) shower since last Friday. Nice. I am starting to be able to use my iPad again, but not without suffering from the 'exertion' afterwards so you might not see me around as much. Texting too is tricky just now.

All I can do is hope that I return to my 'best' quicker than I did after my last setback. Wish me luck. 

Wednesday, 7 August 2013

Pain, pain go away..

...don't come again another day.

Muscle and joint pain come hand-in-hand with this condition.

I am fortunate enough to not experience chronic pain but others are not so lucky. The pain is constant and neverending and never truly leaves them alone.

For me, it comes and goes with particularly bad bouts of it after some kind of activity, like doing something as wild as having a friend come to visit. 

Pain that comes from non-M.E sources has a cataclysmic effect on my M.E. symptoms. Something as small as a paper cut or insect bite or just a small bump from walking into the kitchen table (bad balance, you understand) will, and does, wipe out the rest of my day. Period pain, banging my gums with my toothbrush, wisdom teeth... This is why I have to stay away from getting my legs waxed, for example, or re piercing my ears like I wanted to on a whim. 

When I am in pain, it isn't the area of my body that causes me the most problem. Every time, the main problem becomes my legs. It is as if that tiny paper cut has pulled the plug on the energy supply that provides my legs with much needed strength and energy. It suddenly disappears. My legs become so weak that I am unable to lift them up onto a chair in an attempt to get the blood flowing through my body properly. 

For perhaps the first time since my M.E Journey began it was pain that meant I had to cancel plans to see a friend at the weekend. 

It hurts too much (pun not intended) to think about it so I won't go into anymore detail just now, but I am once again so thankful for having the understanding and wonderful friends I have.

Disappointment doesn't begin to cover it. Perhaps it was M.E's way of reminding me who's boss. I had had a lovely week (not necessarily feeling well, but certainly able to bake a cake, meet up with friends and crack on with my driving.) I had dared to celebrate my driving achievements by posting about them on Facebook and even emailing the CFS clinic with the good news. It seems I spoke too soon and, health-wise, things are unravelling at an alarming rate again. Am I on the brink of returning to the Dining Room? 

I can count the times I've questioned what the point of carrying is, on one hand. This was one of those times. The hope and positivity, the grit and determination was suddenly vanished. It was replaced by anger, frustration, and despair and then finally a hollowness. Numbness.

And my mum seemed to be the same. "Oh Anna. It is so unfair" and then the promise that she and my dad will always, always look after me. "If this is all there is we will always look after you." 

I knew this was coming. It was long overdue. I had dared to enjoy myself and now here we are. It isn't a full blown relapse*, 'just' a setback. Another one. How many times can one person go through this cycle? 

So pain, for me, is much more than physical pain. It is the pain of accepting that recovery is perhaps more a state of mind than an actual physical process. I already knew that I was likely to be 'In Recovery' for the rest of my life; always an M.E. sufferer but just not a severe sufferer like I had been. Things had been looking so good but I made the huge mistake of believing it was real. I forget what M.E. really is. Unforgiving. Harsh. Cruel. In control. 

This is a pain like no other. 




*I see a relapse as a return to how things were in The Beginning; relapsing and finding oneself right back at the start line.

Thursday, 1 August 2013

Oh woe is me

There were a few days recently when I went through a bit of an internal battle. I was on the verge of throwing all of my toys out of the pram, as they say. It was all feeling very unfair. And it is unfair isn't it? 

I wanted so badly to be at Summer Camp. There were no tears, just a feeling of almost desperation.

I'm meant to accept and be happy with the silver linings.

One evening my parents and siblings were discussing the logistics of the next week's Camp. Like looking through sportswear catalogues, listening to Summer Camp chatter is becoming a form of torture. It hit me that the only decision I faced was which DVD to watch in bed that night. What had happened to my life? What had happened to Anna Jones, the Duty Manager? 

It had been yet another day of sitting, albeit in the garden with my feet in my newly purchased paddling pool (one is never too old) but it was still just sitting. No reading. No music. No television. Just a few minutes on my iPad every hour or two. Fun. Fun. Fun.

I was frustrated that I can't even have visitors or friends come round to sit with me because that, too, is exhausting. M.E. has forced me into isolation and reclusiveness because I am too poorly not to be alone. (But then I am too poorly to be alone because I need babysitting. Grrrr at you Myalgic encephalomyelitis!!!)

Alas I have just elected myself to the position of Head of Quality Control of the Tuck Shop. It is of vital importance that the sweets are checked before being sold. Well I think so anyway!!! I also handed a pen to my sister while she was working her way through some paperwork. Ever-Helpful Anna, that's me! So my role has changed somewhat...but things do change; life is full of constant change whether we like it or not. 

I'm not sorry for moaning. Sometimes you need a good moan. We all do. Poorly or not. 

I believe the down days are important. It would be unnatural to remain chirpy and upbeat all of time, especially given the circumstances. I don't fight my feelings. I let them be. There's nothing wrong with feeling a little bit miffed with my lot every once in a while. My mum is wonderful at keeping me in check though. She sometimes jokingly allows me an afternoon to wallow in self pity and then I am to pick myself back up, dust myself off and "just keep swimming."