Archive for the ‘Disability’ Category

Madam, I Have a Cure for Your Fibromyalgia, You Just Have to Wait 20-30 Years

Friday, July 4th, 2014

I had a meeting with the daftest, well meaning doctor I’ve ever met at pain clinic today. I met him after I met the nurse who listened while I described that my pain radiates from my spine like a cruel gnawing octopus, its tendrils creeping up and across my back making it feel on fire, irritated, poisoned; that my tender feet feel every bump on the pavement; that I’m so tired I drive the length of my street so that I can catch the bus; that my skin crawls at the thought of someone touching me or giving me a hug, that I can’t think of the words to speak when talking to people and find focussing hard, and that if she looks at the picture of the human form on the ‘how’s your pain’ questionnaire she would be hard pushed to find any area that’s NOT shaded to show where the pain is. She was great, patient, positive and concerned when I told her that I’m struggling with a decision of whether to reduce my working hours or not, unwilling to let go of the probable illusion that I’m somehow coping if I work full time. So, after I’d spoke to her she sent me back to the waiting room to see the doctor. If only she’d thrown in a description beyond his title, like ‘madly unrealistic’ or ‘never having suffered the kind of pain you suffer’. If she’d done that I would have braced myself.

He smiled and showed me in. His opening gambit was that there was ‘good news’, and that is that Fibromyalgia goes away in old age, NO old people have fibro….(throw caution to the wind there doc, not ‘some’ old people but NO old people). I was so blown away by this ‘fact’ that I said ‘Oh that’s nice for them’ (me not being old and finding the thought of waiting 30 years for a miracle seemed a bit less than ‘good news’). I said my mum has Fibro and he dismissed me, oh that must be ‘secondary’ fibro (which is clearly a totally different disease because an old person has it). He also told me I could think my way out of unbearable pain by thinking happy thoughts and that when I am exhausted and in bed at weekends so I can manage to stay in work in the week that all I actually need to do is ‘find’ my extra energy and it will come. I explained that whenever I ‘find’ extra energy I am actually borrowing it from the next day or day after. He shook his head like he’d heard the spoons theory and dismissed it as horse manure (when I read it, I thought ‘my god that’s my life – I certainly didn’t develop a set of symptoms to fit a theory I’d never heard of) and he said no, no, it doesn’t work like that…I told him he was wrong because that’s exactly how it works for me and I have been digging deep to find extra energy from a shrinking reserve for years and for the last 8 -12 months I have found that I can do less and less outside of work and even the things I enjoy, like my music, are difficult; that I can’t do a big trolley of shopping because I’m exhausted before the trolley is even filled, I can’t continue volunteering for Childline, I don’t go out visiting people, struggle with days out and actually struggle with staying in work now, which is horrifying because it makes me feel useful and makes an important contribution to our income and to my children’s role models, thinking of reducing my work time is an extreme decision for me. He said ‘what you need to do is think happy and then the pain will be less and the energy will be more’. I told him I have been thinking positive for many years in the face of increasing pain which was undiagnosed for most of those years, and that right now the drugs they give me are less effective than 2 years ago and I am in more pain, more often and am more exhausted and that a ‘cure’ of old age is no cure at all, if it’s 20 year away (and if it exists at all – but I didn’t say this). I also told him that when the pain was managed and the exhaustion was under control I am very happy, people would vouch for me, I am very positive without the hindrance of confusion, energy and too much pain. I am going to take him all the leaflets and booklets given to me by his colleague, the specialist who diagnosed me, who told me that there is no cure but lots of things can help (like medication, pacing, reducing stress). All those pamphlets (and the NHS website) say that Fibromyalgia is a condition without a cure, which may occasionally go into remission (not age dependent) but is progressive. The fact is, some people’s Fibromyalgia DOES go away when they’re older, but then again some women find it goes away when they’re pregnant, for so many others it stays and for unfortunate few it gets worse, and I hope I’m not one of those. gah. On the plus side, he did offer me the lignocane infusion. I am on a 3 month waiting list…pain clinic, where you get to wait and think about your pain for 3 months while your drs go on their summer holibobs (yep, that’s what I was told). In the spirit of being fair(ish) I did some research of my own tonight and found this article which is clear that age is not the miracle panacea he would have me believe.

I Wake Up in Enraged…

Sunday, February 19th, 2012

Every bloody day. And if I don’t wake up enraged I wake up prepared to be enraged. There’s a downside to this social interaction. For the majority of my life social interaction meant deciding whether or not to go to the pub, which club I should join and who of my work colleagues I could interact with without breaking out in hives, or which newspaper I could read without feeling herded.

I remember when bricks came in to fashion. I despised the way people stopped having real conversations, actually interrupted them ‘oh, sorry…sorry…it’s the phone…’ to have another conversation which was somehow far more important because it was on a mobile phone.  I remember the first time I used one, I borrowed it and hid in a corner under a stairwell so that no one could see me doing this very embarrassing thing.

I was among the first ordinary people to use the internet for socialising. I had AOL on floppy disk. The one before Aol 3.1 whatever that was, I sat listening to the dial up tones and knew that in the next five minutes I could be chatting to someone in Sunderland, avoiding a creep from Leeds ‘a/s/l?’ or teasing a twit from Norwich, or even a  sheltered nerd from California who thought that Wales was in England and England WAS the United Kingdom. All good clean fun, well all fun anyway. There were times in the day when if I joined a chatroom or a forum I could actually be the only person in there for a while.  Given how few chatrooms there were this was quite a feat and soon ceased with the dawn of fixed price net access (we’d previously forked out by the minute…oh yes, one deeply addicted month my internet bill reached well into three figures).

In the early days I learned about trolls and snerts and the downsides of the next. I had my first stalker on the net, which carried through to real life, scarily. Someone who spied on my conversations and then contacted my family with twisted details of them. All very bizarre considering I wasn’t really that exciting.  However, on the upside I also met my best friend, and even got introduced to my husband on the internet.

These are the ups and downs of socialising on the net. The extra joys and facets to a social life that would never have happened before the dawn of this technology, I no longer needed to join a club, I was a member of the human race. Something I hadn’t quite banked on, besides getting to know a wider ranger of people, was the access to the news in a way I’d never encountered before. News on my terms. News that was passed to me by one source and the freedom to check it and research it and look further into it to my heart’s content. And with this ability to learn more about the world came the awakening of my social conscience, to begin really questioning motives and decisions and policies. I’m not saying I was completely passive before. If you ask Beardie he’ll tell you I’m quite passionate about the things I believe in.

One day, in the history of my internet use, I  joined twitter. I didn’t have a clue, I was twitter jerk and didn’t get it at all. I hashtagged like an idiot and bored myself silly and left it alone for a while. When I did come back to it something clicked and I realised I could use Twitter to meet people who interest me, people who like the things I like and who believe in the things that I have a passion for. I primarily thought about music and my new home in Birmingham and how I didn’t want to be isolated in these things.

What happened next has been quite interesting, to say the least. We had a recession and then an election and from that day on social networking has assisted me to understand more, feel more and take part. I feel I have some point to my passion, some grip on my anger. I can write to MPs, Lords, I can have a pop at Tesco, Cameron, hooligans, who ever it is that makes me angry and I can do these things feeling bolstered by the knowledge that so many others feel the same way. Previously I had an idea that people were angry but thought (wrongly) that they were apathetic. They were not, they just needed some way in which they felt they could make a difference. It is not in all of us to march, wave banners or publicly protest in a very visual way. I am thankful that some people are, very thankful. But so many more people now feel they have a way of expressing themselves and feel part of something very important.

Social media is there for us to utilise in whatever way works for us. It might very well be that Justin Beiber is your new god of choice but it could also be that you are frothing with anger at the treatment of Romany Gypsies, disabled people, single parents, the poor, the unemployed, the NHS, the homeless, the soon-to-be-homeless, the uneducated and broke, the about to be educated and broke, the…oh look you get me. There is an awful lot to be angry about at the moment and I suggest that you get angry or passionate, that you do something about how you feel. Buy the CD, write the email, post the blog, make a difference.

My next blog is supposed to be about how to make chicken, sausage & seafood gumbo.  Hey…food…it’s important.

And Finally…

Wednesday, February 1st, 2012

Yes, so I’ve been away for a bit. I had to make some hard decisions about what I can do with my energies and blogging sort of came bottom. I’m not promising to do better.

I’ve had a bit of a breakthrough and I thought I’d share. After years of dreadful, mysterious and downright annoying symptoms the doctors finally decided to look at the whole instead of each individual symptom. Novel. I’ve been sent to this specialist and that specialist only to be told ‘no it’s not X’ or ‘definitely not Y’ but never being told what was actually wrong. Symptoms ranging from stomach and bowel problems, hair loss, painful joints, exhausted and sore muscles, feet that can’t cope with shoes or duvet covers, hands that need to soak in warm water because they’re too painful to touch, a feeling of being poisoned, a feeling of being windswept/overexposed, dry skin, headaches, nausea, well….the list goes on and on. It doesn’t always come at once, i get waves of feeling dreadful and get slight improvements, never back to my carefree days and then the dread feeling of the wave of greater illness coming on.

‘What’s wrong with you?’

Well, there are things i know that are wrong. A facet joint damage caused by a nasty car accident which took a couple of years to get over at the time but has never given me a day off work but does give me continuous pain. I also have a leg length differential which went on undiagnosed for long enough to start me on a path of osteoarthritis in my hip. I now have a cyst on that hip bone and am waiting for a replacement. But the other stuff, what could I say? ‘I feel ill’ ‘I’m exhausted’ ‘It hurts when you touch me’, it doesn’t really cut it for me and it doesn’t satisfy other people. I’ve often felt that people think I must be a bit of a hypochondriac, complaining of problems but never being able to say more than ‘joint pain’. I’ve recently found out that there is a recognised phenomenon of feelings associated with Medically Unexplained Symptoms (MUS) directly related to other people’s perceptions of those symptoms. How can they be real if they don’t have a name?  I can assure you that those symptoms for me, and many others, are very real and have a huge impact on daily life.

Finally though I went to see a Rheumatologist who listed, looked, read my notes, asked questions, and then delivered not only a diagnosis but also a plan of action. The diagnosis was dependant on other diseases/syndromes being  ruled out by blood test. I went home and waited. Last week I came home from a busy busy day and sat completely wasted on the sofa, I carelessly opened my letters and glanced at a letter, another appointment for another Doctor I thought but no, it was THE letter. The specialist had gone to the trouble of not only giving me that diagnosis but listing all my other problems. I have multiple issues requiring an holistic approach to help me.  I have Fibroymalgia Syndrome, Chronic Facet Joint Syndrome, Leg Length Discrepancy, Right Hip Osteoarthritis requiring full Hip Replacement. I’m using capital letters, these are my enemies and they now have names and I respect them.

Fibromyalgia has been mentioned to me before but the list of symptoms seemed so horrendous I didn’t want it to be me. When I found it it was me I smiled, I cried a bit and felt completely relieved and finally felt recognised. The plan is to go to a Pain Clinic to assess my drug regime and see if anything further or different might help. I’ll also be given a physio plan designed to get me as fit as possible before my hip replacement after the summer holidays. My difficulties now are that I feel shattered walking to the bus stop, having to stop and assess my pain even on this short route and I pay for that walk all day. I fell very badly last christmas thanks to the hip and damaged my shoulder’s rotator cuff and a/c joint, this makes it very painful to use my walking stick and I’m worried about how I’ll cope taking all my weight off my hip. I’m hoping this physio will help with that.

Someone said to me, not long ago, when I was feeling extremely unwell, that I should give up my music and concentrate on work.  Why should I? You aren’t forced to chose a life of no fun/creativity and work yourself into an early grave, and I won’t take that path either. Money is important, work is vital for the family and for my wellbeing and while I can work I’m going to carry on,  but it’s not the be all and end all. At the moment I can only stay working full time by basically doing little or no house work and very little cooking. My amazing family supports me so that I can stay in work. I’d love to work part time and maybe improve my quality of life, reduce my pain etc but there’s no chance of getting higher DLA in the current climate which means I’ve got to continue grinding myself into the ground. Doing something pleasurable like music enables me to feel that it’s worth it.  Even so, one 25 minute gig leaves me feeling like I’ve squashed in an extra day’s work and I’m not sure I can keep up the balance, because it isn’t really balancing out. I hope the pain clinic can help that.

The current debate and plans for welfare reform horrify me. Not just for myself but for all people who are in unfortunate, vulnerable, weak or disabled circumstances. No one chooses to be made redundant, disabled, the parent of a disabled child, a vulnerable person, etc. No one wishes to be in a position where they’re unable to move out of house that’s too big due to housing shortages but unable to rent the spare room out due to threats of being criminalised. People don’t chose to give up work due to increasing illness as ‘lifestyle choice’ they do so because it’s Hobson’s Choice.  I feel very lucky that I can still drag myself in on my bad days, because I cling on to the knowledge that I can spend 48hrs in bed at the weekend if I need to. When the cost of my week in work exceeds the compensation of 48 hours in bed at the weekend then I will have to take stock again. I’m not asking for anyone to feel sorry for me but I have paid into the system that’s supposed to protect me and others in these circumstances. I need to know that if I can’t continue to work full time I’ll be supported to continue to work for as long as I can, as much as I can by a welfare system that is there to help me.

Invisible

Wednesday, September 22nd, 2010

Anyone who follows me on twitter may be aware that I’m a fan of lifelong learning. Last September I took the hugely insightful Basic Training for Prison Work course, run by Prison Link who are a referral agency for the Probation and Prison services. Prison Link is a christian charity which works with Black Minority Ethnic prisoners literally acting as the link between their prison life and preparation for their new home life. They listen to them, support them and help the make the transition to a positive new start (hopefully). I learned so much but the more I learned the more I realised I knew nothing and had few skills to help. I decided to start a counselling course and was lucky to find one starting immediately, completing level one and level two in quick succession and through a lot of hard work and commitment.

Counselling is one of those things you can’t just walk into. You have to work your way through the learning process, from the bottom up, building experience with theory behind it so that you don’t go out into the big world and fuck up someone’s fucked up life just a little bit more.  I’ve learned about myself since I started studying. I’m now horribly aware of my selfish attitudes in conversation; of how I used to plan my next step in the middle of listening to your current sentence

‘my husband hates me, my life is falling part, I don’t know where to go from here….’

‘I just need to pick up some bread, and milk…and…sorry, what did you say?’

Yeah, I could be a bit shit, and without constant self awareness I still can be but I’m working on it. I also now know that what I thought were my weaknesses are my strengths. I’m told constantly by Beardieboy that I allow others to put themselves before me. I don’t see it like that. I make a decision to nurture and put the ones I love first.  I am in charge of that decision, I don’t feel put on. What am I here for? I’m here to take part, to be a mother and a partner and to do that well I do need to give of myself. I like that about myself.

So anyway, I decided to do level three. It’s a big step but it’s a step closer to working less for better reward. I work full time, taking an NVQ3 at work as well and have children, a husband, make music, perform, have friends, etc so take another course, with a demanding homework schedule is only for the committed. I also happen to have a mobility problem.  I mention it because it affects me but I mention it last because I don’t want it to rule my life (and god knows, it tries to).

I have stealthy arthritis in my hip, toes, hand, wrist, shoulder, blah blah blah. I also have a back problem from a nasty car accident over a decade ago. Go on, get your violin out. I write badly, and the longer I write the more painful it becomes and the less legible it becomes. I need to move regularly to stop myself ugly pained faces, you know, the usual shit. Oh and I get very tired, but hell, I’m a parent, I think it’s possibly in the job description.

I applied for the course and arrived at the venue. The seating was limited and all low with no arms. My nightmare. I can’t stand, I can’t sit. I had to ask to be shown to a proper chair like a great aunt. We filled in forms and were told they were oversubscribed. We needed to take a test and if we passed that, an interview. Isn’t this government’s funding policy great. A course is oversubscribed so…turn people away. Whatever you do DON’T put on another course.

I arrived to take the test and again there was nowhere to sit and I had to ask. They wheeled out a huge chair that had a sign over it with an arrow pointing at my head saying BLOODY NUISANCE. I sat on it and ignored the sign. We were directed to our test room and another lady with a walking frame was left at the back. She was audibly embarrassed so I strolled along beside her chatting to make her feel less so, making me last to arrive. I explained I needed the bathroom, was nodded at and went as quickly as I could. I got back and was shown a seat but before i could even take off my coat he said ‘turn over your paper’. I pulled him over and said ‘um, I need extra time. I have a problem with writing, because of my hand.’ He said ‘I WISH you’d told me SOONER’. Hm, like when?Perhaps I should have texted him from the loo. He stood looking indecisive for a few minutes until I said ‘The longer it takes you decide the more time I lose anyway thereby making me more disadavantaged’. I begrudgingly received an extra 10mins, but at the end of the normal time he looked at my paper and said that he could see that I don’t need more time so I could stop with everyone else.  I was so disgusted I agreed and handed my paper in without making my writing more legible, which was what i needed that time for.

I left the college feeling pretty invisible, no other word for it. I was made to feel different by another person’s indifference to my disability. I wasn’t asking for cotton wool, just a fair chance. I was determined that it wouldn’t happen again. It did.

Tonight I had my interview and they spent half of it asking me if i felt I could meet the learning outcomes of the course given my health problems. ie are you worth our effort? are you worth a place on this course? will you spoil our success rates? (how’s that for a multi-part question?) I had to fight my corner until I finally said, ‘I will not be refused a place on the basis of my disability’ to which a horrified face stared back at me. ‘oh no, there are a number of reasons why a person might be turned down, we just meant how would you feel if you couldn’t achieve the 80% attendance rate?’ Much like the rest of the class would I imagine. Shouldn’t they actually be asking me ‘how would we best support you in ensuring you are not disadvantaged?’ or how about ‘let us know if you’re ill and we’ll work it out’. All of the above.

They looked at me for further reassurance. I smiled and shrugged my shoulders, the penny dropped and they finally did say ‘if you are ill we could possibly arrange extra tutorials, but you might have to accept that if you have a long period of illness a deferment might be necessary but would be possible’, but it really was a long time coming . I looked at them and they looked up at the neon LIABILITY sign over my head and said they’d get back to me. I left feeling invisible again.

As it turns out they’ve accepted me on the course. I knew they would. My folder was great (it said so in the comments, if not on any of my overhead signs) and they realised I might make a fuss if they turned me down without good cause. I now have to get higher marks than anyone else to prove to myself that they didn’t just take me on out of fear.

I was going to become a counsellor for families of prisoners and offenders. I was going to do it to give people a chance to break the cycle. Now I can see that what I need to do is counsel people to enable themselves, so they can see past the boundaries and labels other people give them and they give themselves, so that they can become visible.

(sorry if that was a big maggoty dog turd of a post but I had something to say, and well, this is the pooch poop dumping ground).