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12 September 2020 @ 01:41 am
Rawr... Friends Only, folks!
19 February 2011 @ 01:20 am
There's been a new report published that suggests M.E. sufferers benefit more from GET (Graded Exercise Therapy) and other, similar techniques than pacing themselves and adjusting their needs accordingly.

I can't actually begin to express my rage on this subject without spontaneously combusting. So, let's get a few things straight, from a personal perspective:

- I've had M.E. for nearly fourteen years, now. I was diagnosed when I was 12, after a spate of infections left me completely unable to get out of bed on some mornings. It took eight months to fight for a diagnosis - which is nothing in comparison to some of the people I know who have had it for decades and are still begging for acknowledgement.

- M.E. has been classified as an illness that does exist, by WHO - incidentally, it's not under 'Psychological Disorder What Makes You A Bit Tired', it's a complex, neurological condition that has roots elsewhere (hence the recent XMRV findings and blood donation banning).

- Exercise exacerbates symptoms. It is, in fact, a diagnostic marker. By exercise, what I actually mean is general, day-to-day living not, as some might think, running the London Marathon or attending the gym three times a week. If you can't brush your hair, or shower regularly because two weeks ago you went out shopping with a friend for an hour, you're probably not just a bit under-the-weather.

- In fact, exercise is actually bad for M.E. sufferers and can and will produce massive, debilitating relapses that render the individual completely incapable of sitting up, swallowing or even, in some rare and horrifying circumstances, breathe on their own.

- There are psychological factors to this illness that I am not going to deny; if you spent half of your adult life trapped indoors, wouldn't you get depressed? Agoraphobia can come into play when this occurs, as anxiety issues about presenting oneself to the outside world start to become a concern. I, myself, suffered with this to such an extent that I would refuse to leave the house for weeks at a time and, if I absolutely had to go outside, I would wear as much concealing make-up as possible in order to look healthy.

- We aren't afraid of exercise. Actually, it's quite the opposite - most M.E. sufferers, until their deterioration, enjoyed a healthy, active lifestyle. Some were University graduates with top honours, others were once high-flying business executives, and others still were pursuing regular hobbies like tennis, gymnastics, football, fitness and so on, in between bringing up a family, or attending some level of education. Most of us would give anything to be able to revert back to a former life when energy wasn't about how many 'spoons' were allocated for that particular day, and whether they were enough to allow us anything more than getting out of bed and sitting upright.

- For those of us who are not as affected as others, we still experience our own set of symptoms that make going that extra mile potentially dangerous: I attend University, for example, but that does not mean I can have a regular, active social life without massive implications. During essay periods, I often find myself unable to do anything other than work or sleep, struggling to even attend lectures, so as to achieve marks that are good enough. For others, it's about working whatever job they can find so that they have money to live off. The benefits system is currently reviewing policies and recipients of what was known as Incapacity benefit, and therefore, have pushed some genuinely poorly people back into working because they are afraid of being seen as 'lazy' and 'scroungers'.

- M.E. is an illness that affects children as young as five or six, and adults as old as sixty or seventy. It is most common in women (2 in every 3, give or take), and usually develops during times of personal trauma, physical illness and injury, which thus leads a lot of people to believe that it is a matter of 'getting over' their health barrier to achieve normality. In some cases, the sufferer is well, is struck down with a 'flu-like virus or a glandular infection, and they never recover fully. For some, a lifetime of health issues has culminated in the diagnosis.

- Finally, in my time of desperation, I have tried all sorts of nonsense to help my health: Cognitive Behaviour Therapy, dietary exclusion (to the point of a vegan, sugar-free existence), herbal remedies (ginseng, gingko, valerian, etc.), conventional medication (at one point, I was taking up to 20 tablets a day), psychological intervention (in case I was, actually, going mad), Graded Exercise Therapy and just throwing myself back out into the world. None of these have conclusively cured me, or aided me in any way. At the very best, all I got was a mild relief from pain with prescribed medication and a way to manage some of my other, associated problems. I haven't resigned myself to the scrapheap, as I am doing a full-time degree, I live independently of my family and I am in a stable relationship. I'm nearly 6 months pregnant, so I can sustain another life alongside my own, and I sometimes like to go for walks when the weather is favourable. On my bad days, I can't leave my bed, and am in so much pain I am physically unable to keep from crying; sometimes my brain forgets to work properly and I leave the oven on in my flat, or I forget to put something away; I often struggle to maintain a regular sleeping pattern or cycle; my joints permanently ache; I occasionally find it painful to brush my own hair; at my very, very worst, I have been unable to swallow without pain, or eat without needing a nap. I live a half-way life between health and total sickness. I do know, however, that this illness I have needs to be taken seriously. We need more research, more funding and, above all, more understanding. If you review your diagnostic means, you will lessen your chances of a wrong diagnosis - that will mean less people will rely on benefits, and more will be appopriately cared for. But without the money or the consideration, that won't happen. So, screw those articles on exercise, and 'school phobia'. Raise some positive awareness and one day, I'll stop telling the world how tired I am and will, instead, share how energetic and busy my life is.

Rant OVER.

Kept public for anybody interested in sharing this.
Current Location: M13
Current Mood: annoyedAnnoyed.
26 June 2010 @ 01:13 pm
As someone who suffers from an 'invisible' illness, I often struggle in coming to terms with the use of crutches for necessity. When I first started requiring additional support for getting about, I was about thirteen years-old and it was more a matter of if-and-when I needed them, rather than consistently. When I relapsed several times over a period of two years, they became more of a prominent figure in my life but, once I got better, I consigned them to the garden shed, thinking that, if anything, they might come in handy if I accidentally broke my leg.

Which, of course, I have. Now, I've experienced the use of walking aids from two separate realms; the realm of 'support' to alleviate joint pain and the risk of collapse, and the need for complete reliance to help broken bones. Part of me, yesterday, felt ridiculous for going out again with the crutches in tow for M.E. symptoms. Judging from the looks I received on the bus and around town, I couldn't realistically justify myself to rely on a stick unless I had a mangled lower half. My confidence in using a stick for the purposes of broken bones has never been an issue but the confidence when it is a matter of keeping oneself upright for the majority of a walk, be it to the local shop or into the city centre, is a different matter altogether.

In this vein, I'd like to discuss the fact that some of the general population are clearly ignorant and impolite, too. When I'd bolstered myself enough to hobble outdoors, down the street and onto the bus, I noticed several young children eyeing me up, a few elderly people giving sympathetic glances and one or two folk simply bustling past. I thought, 'Okay, so it isn't that bad - you can't expect kids to understand and at least the old people understand'. Getting around town was something else even more entirely. From the moment I stepped off the bus, I was bumped into, knocked about and looked at unreservedly. I walked over to the Northern Quarter and popped into the 'trendy' Oxfam and, on my way around the shop, I accidentally caught the back of a young woman's ankle. I immediately apologised and in return, I received a glare - a withering, 'Good, you got in my way' glare. I left the shop embarrassed and obviously more aware of my stick placement. In H&M, the matter was similar, and the aisles are hardly large enough to accommodate an individual using walking aids, so I kept on finding myself attached to clothes or coathangers, or worse still, tripping over myself, with people ignorant to the matter barging past and knocking me. The Arndale Centre was somewhat easier as it is, of course, much more spread out but, again, places like Claire's Accessories and New Look were impenetrable. Claire's simply because the shops are so damn small, and New Look because I had to climb several flights of stairs as I (honestly) felt too embarrassed to ask if they provided a lift. At least, in Topshop they have escalators, though Topshop is again a place where the aisles are designed for anorexics with a set of fully-functioning legs. In queues, I could see some people contemplating whether or not to let me go before them (!), whilst others were genuinely very polite and allowed me to go ahead. I wanted to pop into a shoe shop for some wellies but gave up because the place was packed high full of school-kids and rowdy teenagers and, frankly, having had previous experience of said collectives kicking my sticks from underneath me, I shuffled off disappointed that I couldn't build up the confidence.

Also, for Manchester-folk - wouldn't it be nice for the Arndale to consider seating areas? Not necessarily near any food courts, but simply for people (pregnant, parents, those such as myself) to sit and recuperate, rather than struggle onwards, almost at the point of delirious exhaustion.

On my way back, something did brighten up this otherwise substantially draining and altogether confidence-knocking trip out; upon getting into the bus (and I took note that the driver did not lower the bus for me to get on with ease, causing some issues with getting in and out) a lady kindly offered her seat to me as she was sat in a disabled section. I declined but said 'thank you' regardless, as there was a spare seat just opposite which granted easier access. Nobody else occupying those two rows of seats did the same thing.

What kind of culture do we live in where young people are left to struggle? The world is so terribly concerned with itself that it neglects the few who need extra help. If I were in a wheelchair (heaven forbid, for that in itself is a trial and I wouldn't wish that on my worst enemies), the bus driver would've lowered the vehicle for me to get onboard, others would have helped push me and, in shops, I'd have not found myself being bumped into or given angry looks. However, in a wheelchair, you learn that very few shops have a policy on wider aisles, some people will laugh and point and, worst of all, will assume you take longer than they will so attempt to get in front of you in queues. The only place I have visited in all of my time as a 'disabled' person has been the Primark in Liverpool which prioritises wheelchair users in queues and offers a lowered counter so that there is no difficulty in grabbing bags or handing over money.

None of these matters will stop me from using my sticks when I require them but it is genuinely disheartening to be faced with such challenges. A hundred years ago, people were so much more polite and ready to assist (of course, depending on your class status and where you lived, but let's just pop on those rose-tinted spectacles for a moment). Today, we've become so trapped in our own thoughts that we no longer see the rest of the world until it collides with us, sometimes quite literally, and we return it with a nasty glance and a withering sigh.

I'm leaving this public because if anybody happens to stumble across this and wants to express any similar thoughts to their non-LJ friends (or those not on my F-List), they are welcome to.
Current Location: M13
Current Mood: pensivePensive.
Current Music: Bad Religion - American Jesus | Powered by Last.fm
11 May 2010 @ 01:09 pm
Well, ladies and gentlemen, it's M.E. Awareness Week. What does this mean? Basically, it's a week in which various charities, including  AfME and AYME (Action for M.E. and Assocation of Young People with M.E., respectively) and their members go out into the public arena and discuss what life is like for the average sufferer. Alongside this, it raises money for relevant research, charity services and local support groups. When I was sixteen, I decided to discuss M.E. on a regional radio station in order to boost awareness. It got a lot of positive feedback, and many of my family and friends became more aware of the debilitating nature of the illness I had suffered from for such a considerable portion of my life. Here, in essence, I am going to tell you all about how I got diagnosed, some of the obsctacles I encountered and, above all, the impact it has  had on my day-to-day living. If you aren't interested, don't read it. If you'd like to know about something that has shaped me and made me the person I am today, continue on. It's behind a cut, as I have a propensity to ramble on...

The long and winding tale...Collapse )

There you have it. My little piece. As always, if you have any questions - ask!
Current Location: WA2 8BE
Current Mood: relievedRelieved.
Current Music: VNV Nation - The Great Divide | Powered by Last.fm
10 May 2010 @ 08:34 pm
Yoinked politely from thedinster :
Music quizCollapse )
Current Location: WA2 8BE
Current Mood: okayOkay.
Current Music: VNV Nation - Sentinal | Powered by Last.fm