Sunday, 31 August 2014

Needs must

Well folks, here I am again. Back laying on a bed in our dining room, just like the end of Summer 2011. Hey ho. 

I refuse to sit here and analyse my Summer to find an explanation for why I've had to relocate down here again. To do that would likely leave me feeling foolish or guilty for what, at the time, was me living sensibly within my means. 

I'm not even sad to be here like I was last time. It's just a means to an end, until I get back on my feet. Pun intended. Giving in doesn't mean in any way that I'm defeated. The relationship between M.E. myself and I just needs a bit of TLC. I'm seeing it as a short term solution; one that might last no more than a night or a week, but I'm not putting any pressure on myself to get back upstairs. What good would that do? 

I know by now that if I want to avoid the worst, or to shorten the length of this payback, I must listen very carefully to what my body is asking of me. I'm not prepared to force or push my poor little legs up those stairs for a start. 

I'm not seeing this as a step back. I am scarily calm about what I thought was my greatest fear; having to return to The Dining Room Days

So yes, I'm pretty poorly at the moment but I had a jolly good run (not literally) and managed to avoid this for a good 2 and a bit years! 

Saturday, 16 August 2014

More than just a worrywart...

We're all friends here so I'm going to be honest with you. I sometimes think that the anxiety I feel might be getting worse. Some days I am embarrassed to admit it but other days I'm not. Why should I be ashamed? I don't actually like the idea that one can 'have anxiety'. It doesn't sound like very good English but hey ho. 

I might have told you before that I first experienced it way back in The Beginning when I tried to cross a road by myself but didn't feel I could trust my legs to get me across fast enough despite the gaps in the traffic. Cue panic attack. 

I wholeheartedly believe the only reason I feel this anxiety is because of my physical health and its unpredictability. I feel like my ill health has shattered my confidence in myself because my body is not the body I thought it was. It has let me down. I feel terribly nervous before social events even if they are with friends and extended family I have known my entire life. I have come to feel like I cannot trust my body to get me through a couple of hours of socialising or time spent outside of my house.

I feel unsettled if my family have visitors come to the house when I wasn't expecting them but I believe it's essential I'm pushed out of my comfort zone every once in a while or things will only get worse for me. 

At times I have this overwhelming feeling that something bad is going to happen to someone I love. If my brothers are out late I usually won't sleep until I hear them come home. Don't worry, I've seen my GP about all of this. 

I am conscious that it could get to the point where I feel too anxious/nervous to get out of bed incase the 'exertion' triggers a setback or relapse. The uncertainty of day-to-day life with M.E. is, on some days, shattering my nerves. 

This is the reality of what four years of chronic illness has done to me.  

I feel so out of the loop being mostly housebound that I don't know what people wear for dinner on a Tuesday night in town, or what music is in the charts, or how much parking costs anymore. I worry whether the lighting in the cafe trigger a migraine, or whether the crying baby in the corner could exacerbate my nausea... 

These things cause me to be anxious. You can think they're silly things to worry about. I do too. But this is what chronic illness has reduced me too. A (sometimes blubbering) wreck. No wonder I'm exhausted; my mind works overtime.

For me, this anxiety has a physical impact. The sweating is just lovely! My throat becomes drier than any throat has ever been. (I always was a drama queen.) And the rash-like blotches on my skin are so attractive! I jest. It's all gross. 

Alas I have somehow managed to make sure the anxiety doesn't stop me from fulfilling my plans. The M.E. does that often enough so I am conscious of not letting anything else stop me from catching up with friends. 

It seems odd then, if I am so nervous and jittery, that I am able to share so much of my life online with strangers... 

I've always been one to firmly believe in mind over matter. The mind is a powerful tool. Incredibly so. And I have been able to avoid having a panic attack for a long while. I'd never had a panic attack before I was ill and it took me a while to realise that that's what they were. Nasty things! I ask myself the practised question of "What do you think is going to happen?" or "What's the worst that can happen?" and the answers aren't too reassuring actually. Telling me not to worry is lovely but doesn't really help - I already know that worrying is pointless and I'm actually very good at keeping myself calm, if I do say so myself. 

So there you have it. I feel like I am battling anxiety with thanks to M.E. It's like some awful Buy One Get One Free offer...

Friday, 8 August 2014

Severe M.E. Awareness Day

I rarely ask you or pester you directly to read my posts or to share my links. It's not my style. But would you do it for me this time? I get that it's a lot to ask. There is still a stigma surrounding those two letters M and E and you might not want to be associated with it. But if you feel like doing a good deed of the day can it be to share this post? 

I've felt sad writing this one. Not teary, just sad. It's hard to think of people in this situation. It's hard to think of myself in this situation. At the start of my M.E. journey I was classed as a severe sufferer. I'm not sure I would class myself as one now but I was then. I wasn't tube fed like some sufferers are and I wasn't hospitalised. I didn't have a catheter inserted and didn't need a bed pan. But I was very, very poorly. Poorlier than I am now.  

Sophia Mirza

Today is Severe M.E. Awareness Day. It gets its own separate day because it is considerably more acute than mild or moderate cases of the condition, although any severity is, by all accounts, crippling. The 8th of August was chosen as it was Sophia Mirza's birthday. Sophia was the first person to have M.E. cited as her cause of death in 2005. 

Sophia Mirza would have been 41 today had she had received the appropriate treatment and care and support from the medical world. Instead she died at the age of 32. I cannot even bring myself to type what Sophia endured. To find out more information there are many sites available including:
Yes, she died of M.E. The coroner's ruling can be found on Wikipedia. There is nothing to say that I or one of my friends couldn't be next. Sorry if that's morbid but I'm just trying to knock it into you all. This is serious. This is not just a bit of acute tiredness. This is the failure of our bodies' systems to function as they should: our immune system, respiratory system, cardiovascular system, nervous system, adrenaline system... 

From my research and my own experience I now understand why the label chronic fatigue syndrome can do so much damage. I wonder whether severe M.E is a separate illness in itself and these illnesses shouldn't be grouped. But I'm not going to open up THAT can of worms just yet. 

Life with Severe M.E.

I have seen very, very little media coverage about today. Or about any M.E. Awareness day for that matter. Alas there is an article in The Telegraph where Naomi Whittingham has described be life with severe M.E. 

Black Dress Day
It didn't seem appropriate to smile. My #blackdressselfie and the Black Dress appeal poster

Memory Quilt 

As I mentioned a little while ago, The ME Association had an appeal for photos of sufferers to make into an memory quilt. The finished product can be seen here.

The M.E. Cover Up

I only came across this campaign a few days ago on Twitter. It might just be my favourite, if you're allowed favourites with this kind of thing. I urge any fellow sufferers in particular to have a look at the Stonebird website. I like their explanation of why they've called themselves Stonebird. I like it a lot. And there call to 'uncover M.E.' is much needed and greatly appreciated. 

Monday, 4 August 2014

The Dreaded Brown Envelope

Last week I received another DBE (dreaded brown envelope.) For those lucky enough to not know what this means, all correspondence from the DWP (Department of Work and Pensions) arrives through one's letterbox in a brown envelope. The sight of them does something weird to me and my mum has taken to opening them for me or hiding them until she gets home from work so that I'm not alone when I open them. 

The wording of the letters is often threatening and scary in my opinion. 5 pages of words like 'Urgent' and 'action needed' and 'your benefit may be stopped' in bold lettering. We are given a deadline within which any forms must be returned. (A week before the deadline we receive the most threateningly worded letter of them all.) And then there's the bit about being prosecuted if you're found to be omitting evidence. For someone who now gets her knickers in a twist over whether she wants lasagne or chicken for tea it really isn't all that pleasant! 

The latest DBE was yet another letter informing me of the changes occurring at the moment. DLA (Disability Living Allowance) is being scrapped and replaced by PIP (Personal Independence Payment.) Don't ask me why... 

This letter told me if I wanted to claim PIP I needed to ring for a form. Why not just send me the form anyway? The likelihood is that any DLA receipient is going to want to transfer over to PIP. What a waste of postage! Anyway. I believe they're trying to catch me out. One of the standard questions on these benefit forms is whether you can use a phone and hold a conversation. By ringing, one is automatically answering that question. 

Any healthy person would struggle to concentrate for 15+ minutes of dialogue and questions and general disclaimer nonsense. As a poorly person it's not something I'm able to do. I don't even speak to my friends on the phone. Something about not being able to lip read or read people's body language really makes phone calls incredibly hard. Luckily I have my mum to ring and fill in these forms. Hooray for her. 

I am lucky to have someone who can ring the DWP and fill on the forms for me but I just had to give my consent and listen to some declaration of something-or-other over the phone. That alone is an incredibly tough task for an M.E. sufferer; to process the words and sentences quickly enough to make the correct response. Our brains don't function like they used to and the 'exertion' of listening to 30 seconds or less of dialogue over the phone has now wiped out the rest of the day for me. 



The system makes me feel like a second class citizen and a prisoner in my own home. I have to notify the DWP of any changes to my health, good or bad. I have to notify them if I leave the country for certain periods of time. I cannot squirrel-away or save up my benefits for my future like I want to. I have heard of acquaintances being under surveillance; with people sitting outside their homes to check whether they really are housebound like they said they were. 

Granted there are those who manipulate the system. A rogue few have ruined it for the rest of us. (It baffles me as to why anyone would pretend they love a life of reduced mobility...) Programmes like Benefits Street do us absolutely no favours. It's become a witch hunt. I admit to assuming that all claimants were work-shy shirkers before I became a claimant myself. How wrong I was. How ignorant and narrow minded. Tax credits and Child Benefit (or whatever they're called now) count as claiming for goodness sake! 

I know we cannot expect things to be handed to us on a plate and we're lucky to have the financial support we receive but I have never experienced anything so soul-destroying in my life. And we haven't even started filling in the form yet, where I have to think in detail about true state of my health and my life. Seeing it in black and white produces tears every time. 

And don't get me started on the medicals and court appeals! 

Sunday, 3 August 2014

Wheelchair Woes

At one point I'm sure this thing had a name. 


My old blue one was Wesley and I think this one was Wendyline. But the novelty of thinking of this thing with affection has worn on.

Yes it's great that it allows me to get out. But I'm a Jones. We we're know for being sporty at school and now one of us is using a wheelchair, and not for sporting reasons like wheelchair basketball. 

People say "oh you haven't needed your wheelchair for ages." Not true. I just don't go out to places where I might need it. I feel heavy in it. I'm 5'7 and now fairly hefty. It must be hard work for people to push me. It's part of the reason why I'd always prefer not-so-little bro to wheel me around. He's 6'2 and a big lad. 

I need a wheelchair. Me. Anna Jones. Netball captain. Member of the athletics team. The football team. The cricket team. Me. 

Granted, I don't need to be wheeled around the house anymore. That must have been awful for my family; this metal contraption on wheels that was a constant reminder that I was no longer the Anna they'd known for twenty years. 

Being pushed around makes me feel like a burden and an inconvenience. Someone has to navigate their way through the streets. We have to avoid certain restaurants because their wheelchair access is not up to scratch. We have to sit at the front of buses where the rest of the passengers can stare at you and wonder what has caused this healthy looking young woman to need a wheelchair. I can tell my family would rather I want in it. I think it's hard for them to stomach. 

I wrote the majority of this blog post a few months ago. But just as I was about to publish it a friend of mine got her own set of wheels. For the first time in almost a year she was able to leave her house. That stopped me in my tracks. My wheelchair should be my ticket to freedom, not a token of shame. It's not my fault I need it! My friend's adventures  reminded me what my wheels were for. It takes a brave soul to lower/plonk themselves into one of these moving chairs and hand over control to another person. I was once that brave soul. And she's inspired me to take a step back and try to Accept and Adapt once again.