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... read more
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! 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... read more
Aug 1, 2011 | Coping Methods, Daily Life, Fundraising, Volunteering
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... read more
Jul 25, 2011 | Daily Life, Trips Out
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... read more
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... read more
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 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... read more
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... read more
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... read more
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... read more
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 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... read more
Hi, I'm Jade.
I'm in my early thirties, and live in the UK. I have multiple chronic illnesses with my main condition being Ehlers-Danlos Syndrome. This blog is about finding hope amongst the frustrations.
You can contact me at: info@chronicchronicles.co.uk
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