by The Chronic Chronicles | Aug 11, 2011 | Employment/Work
Credit to Marcin Rybarczyk www.wizualnie.com
I received my occupational health report this morning, which made for interesting reading. I might be a little cranky today, okay? So keep that in mind. My work deciding not to pay me anything for the month also didn’t help. (They have reconsidered after many phone calls and emails.)
So, the first thing the report says, on the very first page, is that I’m fit to return to work immediately – remember that!
Then page two began with an introduction from the medical company who said I’d been referred so my employer could find out what my conditions are, whether me working 22.5 hours a week is suitable, how much sickness am I likely to have, whether I still need to work from home and why, and finally whether I’d be covered under the Disability Discrimination Act (NO, it doesn’t exist anymore).
They continue to say I have a number of conditions which include a “so-called connective tissue disorder.” What the hell is that meant to mean? There is NOTHING so-called about Ehlers-Danlos, thank you very much. Then they say I have Fibromyalgia, which is “aches in various joints.” Oh, I wish.
Then the report writer passes it over to the doctor. Thank god, I’ve had enough of that little weasel.
The GP clarifies my actual conditions, where I’m at with medication and medical treatment. That I scored highly for anxiety and depression, and that I looked ‘profoundly unwell.’
He then says I am currently unfit to return to work, although he notes I would like to continue working. He says office based work is completely unsuitable currently due to high levels of pain and fatigue, but perhaps some limited home working would be good if it could be accommodated.
He ends by saying he thinks I would be covered under the Equality Act, under the disability provision.
But now we’re back to the weasel of a report writer, who says again I’m unfit for work (so why did page 1 say I could go back immediately?) He then says I undoubtedly have genuine physical and non-physical problems and that he was surprised to see I have been able to achieve the levels of work that I have over the last few years. Aw, that’s nice.
Then he turns on me and stabs me in the back.
He says commercially they need to consider if they cope with high levels of absence, whether I can work from home with the impact it will have on their ‘commercial value,’ and says he sees no likelihood of recovery for me, as my conditions are degenerative and not cureable.
Wait, we’re getting to the good part, where he shoves that knife in. “From my reading of the referral note further home working may not be possible which then potentially leads to a question of capability. It would be of course for the company to consider the questions and answers regarding home working, and if not a possibility than a careful response needs to be formulated to avoid critics in the event of any challenge.”
So reading between the lines, I will clarify for everyone. We recommend she works from home, which is perfectly reasonable, as she has been doing that for the past three years in the same job, had low sickness levels, and has been damn good at her job. But you probably can’t be arsed to put that in place, so just kick her out on capability grounds- but do it carefully so she can’t sue you. Oh, then we’ll send this report straight to her so she can read this little shitty suggestion.
Well, fuck you too.
by The Chronic Chronicles | Aug 10, 2011 | Benefits
My DLA medical finally arrived yesterday. If you remember I had some difficulties over the location, first by them saying I couldn’t have it at the centre, before they said I could as it was accessible.
The same friend helping me with the claim came with me for moral support and to be a witness, as my last medical went so horribly wrong, when he put the opposite of what we talked about down throughout the form and declared me fine as detailed in the post ‘Applying for Disability Living Allowance Part 2.’
We arrived at the door and pressed the buzzer for entry. I was slightly worried at the big step into the building, but saw a sign with a wheelchair on, that said to ask for assistance. I assumed there was a door around the side or something with level access, but when the receptionist came to the door she informed us that was actually the only door. So yes, I did have to get my wheelchair up that step and the building for accessing people with disabilities did not have wheelchair access.
I asked if there was a ramp, and the receptionist said there wasn’t. My friend pointed out we’d informed them I was coming in my wheelchair, and the receptionist snapped she hadn’t been told. I then asked if she could help me, and she said she wouldn’t. It’s important to note the lady helping me is also disabled, and is on two crutches, so there was nothing she could do. But instead of recognising this, the receptionist turned to my friend and said “You’ll have to tip her in.”
My friend pointed out she physically couldn’t, and finally the receptionist said she’d see if security was about to help me.
This whole issue made my anxiety levels which were already ridiculous jumped to heart palpitations with the urge to curl up in the corner of a room rising. I was embarrassed, and just wanted to abandon ship.
The receptionist returned to say there was no security in the building, and that I’d have to get myself in. Again, we both turned to stare, before she decided to go and get the doctor to inform him I couldn’t get in.
Luckily at this point a really kind man walking past stopped and asked if I was okay. I explained I was trying to get into the building, but couldn’t. I thought it could probably make the step in the electric wheelchair, but I couldn’t do without someone standing behind just to steady it in case it tipped. My wheelchair has two small anti-tip wheels at the back, that actually make it more difficult going up steep steps, so he managed to adjust them out the way, then helped me up. Thank goodness for human decency.
The waiting room had a lot of chairs in the way, so I decided it was safer to just to wait in the corridor. The doctor came and got my notes from the receptionist and went to read them, while she came to look at my ID. The letter said I needed my passport, or three other forms of ID. While fishing them out, she said I only needed one, and that she had no idea why it said I needed three. I explained her we weren’t blaming her for the building, we just couldn’t believe they hadn’t made provisions for a wheelchair. She agreed and said the building was terrible.
The doctor then called me in, and we both went in. He seemed confused as to why I had been called in for a medical having read my information, and apologised for me having to come in. He then asked if I already had DLA, and I said no. First claim? Nope. Third. He seemed shocked, and asked if they’d seen all my medical evidence. I explained they hadn’t seen the exact information he had, but I’d had other evidence and knew what was wrong with me.
He then said although he could write a whole report on my medical evidence alone, he still had to go through the form with me. We went through everything, and he did a few minor physical tests like a grip test which he said was poor. He didn’t make me stand as he realised it would be painful.
At the end he said he didn’t make the decision, and they are turning a lot of people down, but he would do his best for me.
I would love to be optimistic at this point, but I have just been screwed over too many times before with other medicals and tribunals that I can’t be. I need to have the decision in my hand before I let myself think anything.
Now all I can do it wait.
Waiting. Credit to Jesse Therrien www.jessetherrien.com
by The Chronic Chronicles | Aug 3, 2011 | Coping Methods, Diagnosis
My pain started when I was 10, and has been constant since I was 15. I saw doctor after doctor and got nowhere.
Some said I’d grow out of it, others seemed to content to tell me it wasn’t arthritis, and send me on my way.
I just wanted to know what it was. I needed to put a name and I pleaded with them for one, but was told they didn’t want to ‘label’ me. I was in non-stop, agonising, soul-destroying pain. I couldn’t go out with friends, I was exhausted and felt completely alone. I thought knowing the name of my condition would make me feel like there were others out there just like me. I didn’t see how it was a label – it was the name of my bloody condition, and I wanted to know what it was.
In 2005 I was told by a rheumatologist I’d grow out of it. In 2008 I got really pissed off, and saw three consultants. In March it was due to subluxation, in July Chronic Myofacial Pain and by August it was simply ‘mechanically related’. What the hell did they mean? They were wishy-washy nothingness!
I was at university one day, and was probably putting off writing an essay, when I put every single one of my symptoms into google and hit search. A condition called Fibromyalgia popped up.
I read down the list and read everything I could about it. It fit me! Everything it said I could relate to. The relief was – I can only describe it as immense. I didn’t even register the bit at the bottom that said it was incurable.
I hit print and phoned my doctors, and made an appointment for that day. It was a doctor I’d never seen before, as I’d fired my previous GP for using the unforgivable phrase.*
I remember the GP finally asking for my symptoms that day. Do you know how rare that it? Most get to pain and stop there, as if the hundreds of other crap that goes alone with it means nothing. He nodded and said yes, it does sound like Fibromyalgia – but you need a clinical diagnosis and so sent me to a Pain Clinic, who still did not give me a diagnosis – but gave me nine facet injections in the facet joints of my neck, and muscles of my shoulder.
It took until January this year – eight years – until I finally ‘hit the jackpot’ by getting some decent doctors and some actual diagnoses. I saw two specialists on the same day, one who diagnosed me with Fibromyalgia, and the other with Ehlers-Danlos Syndrome (and lots of related conditions).
So, I’ve completed the battle in getting the names, and it did help. When people ask what’s wrong, I can tell them rather than shrug my shoulders. I can meet people in the same boat and keep on top of research.
But where do I go from here? My pain hasn’t improved, and in fact gets worse all the time. My lower back seems have gone on the warpath to unbearable levels, and my McTimoney Chiropractor, who usually has magical powers in finding the culprit and sorting it out, even temporarily, hasn’t been able to touch the problem.
Credit to Dennis Taufenbach
Do I keep battling on? Do I keep asking to see new professors who I hear have helped others? Before I got my diagnosis I was going to ask to see an Orthopaedic doctor to try and see if they could do anything with my lower back, but now I have been told I have Ehlers-Danlos Syndrome and Fibromyalgia, are they just going to shrug and say well you have those, what do you expect? Or might they be able to do proper scans and sort out some of the pain? I just don’t know. I feel a bit lost, and am not sure where to turn.
I am on the waiting list for intensive in-patient treatment at the Royal Orthopaedic hospital in Stanmore, for pain management, but it’s still not looking into causes and fixing it.
I guess what kept me going was finding out what’s wrong with me, and now I do, I wonder if this is it?
* The unforgiveable phrase is ‘there isn’t a magic wand that can cure you.’ Did I ask for a magic wand?! No! Just a doctor that does their best to help. That’s all.
by The Chronic Chronicles | Aug 2, 2011 | Employment/Work
My lower back is in pretty intense pain at the moment, so I had to go to the Occupational Health assessment in my wheelchair. I can’t get it in and out of my car alone, so I ordered a taxi. It was the first time I’ve used public transport with my wheelchair and it went smoothly, except for trying to find a taxi in the first place. I rang what seemed like every firm in the town before I found one that had a single wheelchair accessible vehicle. Silly me expected them to have at least one on at all times – but by the sound of it most don’t have any at all!
Wheelchair adapted Fiat Doblò facelift taxi in Cheltenham, UK. (Photo credit: Wikipedia)
The occupational health assessment was interesting – the building wasn’t accessible for wheelchair users, and the doctor was very short on time, and his eyes widened when he saw my list of conditions and said my company should have booked more time, as the appointment wasn’t long enough to cover everything. He asked how many consultants I was under, what I was doing while off from work (mostly sleeping!) and did a depression/anxiety checklist and then tried to finish the visit! I objected, saying I thought I’d come to discuss adjustments and things in the workplace. He asked what I wanted, and I said I’d been working from home at least one day a week for three years which suited me well, and while the company I was TUPEd across to said they’d honour it, they haven’t provided me with equipment. He said he wouldn’t be writing the report, another medical company would, but he’d ‘probably’ mention it. I then said I thought a phased return from work might help, and he said yes, they’ll probably do that. He then said he didn’t think I was ready to go back to work, but I don’t see the point of him saying that, as it’s my GP that has to make that decision, isn’t it?
So it will be interesting to see what the report says.
by The Chronic Chronicles | Aug 1, 2011 | Coping Methods, Daily Life, Fundraising, Volunteering
Credit to Puiu Adriana Mirabela
Today I went to a Chronic Pain support group. I love going, it’s quite a great feeling being in a room full of people who know exactly what you’re going through. Sadly it usually clashes with a work day, so I’m not able to go. We spend the time just talking about our current issues – sharing things that have worked for us, having a bit of a vent and quite often having a laugh at ourselves.
Speaking of work, things came to a head when I went to see my GP recently and explained how low and stressed I was feeling. She then said she wanted me to have a break from work, and signed me off for a month. She also referred me back to the chronic pain clinic at the local hospital to see if they can try something new, and decided to put me on Prozac, to see if I can kick this depression.
Work took it in their usual way. I have an occupational health assessment tomorrow, which they asked me to have when I joined the company. I’m quite nervous about it, but will see how it goes.
I’ve been trying to think of something new to do a fundraising event for Fair Access to Colchester. The group has no money, and I desperately want to advertise and do lots of other things that cost money. I’ve run some pamper days for a village hall charity before, and I wanted to do something different.
At the same time, I was trying to arrange a craft themed meeting for Fair Access. I have found lots of disabled people are into crafts, and that’s how I got into them myself really – by looking for a hobby that could distract me from the pain. I suddenly realised the craft theme could work on a larger scale – by getting a large hall, and having lots of different crafters in giving small lessons. For example someone would come in a pay a small fee to make a bracelet, or a card, or paint something. That way people get to do something fun and try out something they may not have done before. It’s expensive starting a new hobby, and you want to make sure you’ll like it before you spend money.
I thought I could have some tables selling crafts, some children’s stuff and maybe a raffle or something.
by The Chronic Chronicles | Jul 25, 2011 | Daily Life, Trips Out
Cover of Ghost (Special Collector’s Edition)
I have a hospital appointment in London in September, so while we’re there my Mum and I decided we should do something nice and go and see Ghost the Musical which has just opened.
I phoned the accessibility line for the Picadilly Theatre as I need a space to put my wheelchair in, and they were very friendly and helpful. They’ve booked me an end-row seat, someone to store my wheelchair during the show and my mum as my carer gets in free! They also advised me of the best place to get in for level access, and the nearest parking. Shockingly (or not so, if you’ve ever used an NCP car park!) they charge more for the parking than my ticket will cost! So let’s hope we can find some parking elsewhere.
I am looking forward to it already!
by The Chronic Chronicles | Jul 22, 2011 | Benefits, Employment/Work
On Tuesday the DLA doctor turned up at my doorstep – despite the medical being cancelled.
Yesterday the lady from ATOS phoned to give me a new date for the medical at the centre. So they are continuing to go through with the medical despite the fact my claim has yet to be looked at. Interesting tactics.
In other news, I’ve been signed off work for a month. Hopefully it will help, as I’m just so exhausted at the moment.
Credit to Kurhan
by The Chronic Chronicles | Jul 18, 2011 | Education
The Spoon Theory was written some years ago by Christine Miserandino in regards to a conversation she’d had with her friend to try to explain what it’s like to live with a chronic illness and it’s an excellent read I like to share with people.
Her friend asked her what it was like living with Lupus every day. Christine picked up a handful of spoons, and gave them to her friend, declaring she now had Lupus, and this was her allowance of spoons for the day. A normal, healthy person has limitless spoons and can pretty much do what they want, but someone unwell wakes with a limit of spoons and has to carefully ‘spend’ them and compromise on which task they need to do. Each spoon represents a task needed to get through the day i.e. a shower, getting dressed, making lunch. Each task costs her a spoon. When the spoons run out, that’s it. She can’t do anything else.
So she has to think about what she does, and use her spoons carefully to get her through the day. Someday she wakes
Counting Spoons. (Photo credit: Wikipedia)
up with less spoons than other days, and sometimes she can rest the day before and save a few more up. Sometimes she goes into minus spoons and it causes a massive problem. Sometimes you have an event you have to go to and it will cost you an enormous amount of spoons, but you don’t really have a choice (such as a family wedding).
Those with chronic illnesses often call themselves ‘Spoonies’ because of this.
It’s very hard to understand what it’s like living like this each day and really no one can until you’ve walked in their shoes, but it’s an excellent analogy that hopefully everyone can picture.
You can read The Spoon Theory here.
by The Chronic Chronicles | Jul 18, 2011 | Daily Life, Employment/Work, Vents
I am really struggling at the moment.
The pain is unrelenting. I did something to a tendon in my foot which was agonising, and I couldn’t walk for days. It took ages to heal, and the instant it did I pulled a muscle in my chest/shoulder. I couldn’t breathe without terrible pain, and if I moved it was crippling.
It finally healed, and my lower back started. My lower back always hurts – it hasn’t stopped since I was fifteen. This is worse, so much worse.
I am also completely, and utterly exhausted. Bone-deep fatigue. My eyes are closing against my will, and I can’t summon the energy to do anything. I’ve been going to bed around 7-8pm and sleeping through until late morning, and struggling to get out of bed.
I am currently at work, trying to cling on, too scared to take sickness as I’ve already had one sick day since I’ve been here, and three days annual leave.
Please let this day end.
Fatigue – Nakhon Sawan, Thailand (Photo credit: Wikipedia)
by The Chronic Chronicles | Jul 17, 2011 | Wheelchair
Some members of my family have very kindly clubbed together to buy me an electric wheelchair. It took quite some time to find one that came apart to go in the car, that my mum could lift alone, and was in our price range but we finally found one.
The batteries slide out and it then folds two ways to make it smaller. It’s supposed to be arriving tomorrow evening and I’m very excited! It is a fantastic feeling – having choice over where you can go and not the horrible feeling of guilt you get when someone has to push you.
Hopefully Debbie at Glamsticks will be able to bling it up for me as beautifully as she does my sticks.
Speaking of, I spent some of my birthday money on my fourth stick which is going to be shades of ocean blues.
Controller of electric-powered wheelchair Belize. (Photo credit: Wikipedia)
by The Chronic Chronicles | Jul 15, 2011 | Daily Life
Karen Lee Richards has written the top then things never to say to someone with Fibromyalgia here. Her list, my thoughts. She has more at the link.
10. We all get more aches and pains as we get older.
My pain started when I was about 10, and hasn’t stopped since I was 15. I’m not old. It’s so much more than aches and pains. An old lady shivered the other day and said she felt the cold. I agreed I did too. She glared telling me to wait until I was older. Right.
9. I think I have that, too – I’m always tired.
It’s not just tiredness. It’s crippling fatigue. I’m lucky in that generally I have a lot more of the pain than the fatigue, and I do take a lot of steps to try and pace myself. The second I don’t – I’m screwed up for days. It’s bone aching exhaustion and there’s nothing you can do about it.
8. My friend has fibromyalgia and still manages to work. Maybe you just need a job (hobby, etc.) to take your mind off the pain.
I am currently working three days a week. I work a day, have a day off. I’m off sick a lot, and am struggling my arse off to carry on, because I just can’t afford not to work. It doesn’t mean I’m not bad, I just feel at the moment, I don’t really have a choice.
7. My doctor says fibromyalgia isn’t a real disease; it’s just a wastebasket diagnosis.
Utter rubbish. Sadly a lot of doctors don’t keep up with the research, and still see it as ‘I don’t what else you’ve got so I’ll say you have fibro.’ There is lots of evidence it exists. At consultant at the local hospital said I had it, but refused to officially diagnose me as it was too “American.” If by that he means they take it a bit more seriously, then sure. But the illness is real and debilitating as any other, and has no nationality.
6. If you got more sleep, you’d feel better.
I do sleep. I can sleep up to 16 hours sometimes, but other times struggle to sleep four. But no matter how many hours I wake up exhausted, because people with Fibromyalgia do not reach the ‘deep sleep’ stage, the restorative and healing stage. So the problem is our sleep has no quality to it, it doesn’t really matter how much you get.
5. I read about this new product that cures fibromyalgia.
Yeah? How much does it cost? It’s amazing how many new products come out that totally cure x y and x, but whoops, it costs £1000+. I’ve heard so, so many therapists tell me they can cure me and then not make the slightest bit of difference. If a product genuinely works, I find most people want it to reach as many people as possible at a cost they can afford. Generally.
4. At least it’s not fatal.
But it has changed my life. It took away my ability to walk, to fully enjoy socialising, to work how I wish. Sometimes during my worst days I do wish it was fatal because it’s hard not to when you’re constantly exhausted and in agonising pain. I believe conditions like this should be taken just as seriously as fatal ones, because they truly impact every facet of your life and if it was taken seriously hopefully more resources could be put into research.
2. But you don’t look sick.
That’s because you don’t see me when I wake up almost screaming in pain because some joint is out of place. You can’t see pain visually, but you can if you pay attention.
1. It’s all in your head.
Yeah, something probably has gone wrong in our head like our brain is recognising pain signals far too much, but it’s totally and utterly real.
Common signs and symptoms of fibromyalgia.(Photo credit: Wikipedia)
by The Chronic Chronicles | Jul 14, 2011 | Benefits
Today was the seven year anniversary of my Nanna’s death, and as a family we go somewhere she liked to visit. We were supposed to be going to Felixstowe today, but sadly the weather was so bad we ended up having lunch then heading to a shop in Hadleigh.
In the meantime, the lady helping me with my third DLA claim spent the day on the phone battling on my behalf. She first spoke to the Medical Centre reception and asked whether they were wheelchair accessible, and they said they were, and they couldn’t understand why Atos had told me I couldn’t have my medical assessment there on Health and Safety grounds.
She also contacted the disability help line (not sure if this is the right name?) who were shocked at what was happening. They phoned Atos on my behalf and asked why an earth I was being told I had to have a medical, and why was I being sent for a medical when they hadn’t read my claim form yet – as all the specialists letters in there give them in the information they need. (I’m not exaggerating, they were brilliant, in-depth letters that should get me DLA based on those alone.) The lady at Atos denied saying this until she finally looked up my file and apparently went quiet – so what she saw on the screen, I don’t know.
Atos (Photo credit: Wikipedia)
Atos said they would write to me with a new date of the medical, but the lady helping me is very hopeful that they may actually look at my claim form first. This would mean the world to me, as I’m not sure I can face the stress of a medical at the moment, and the subsequent lies and the way they twist my words into something I never, ever said.
Thank god for this assistance. She really is doing her best to fight for me, and I don’t know what I would do without her. I’m perfectly able to fight for other people, but as soon as it comes to me I just become an emotional wreck – and you can’t when dealing with the Department of Work and Pensions or Atos! So I just can’t thank her enough.
