Oct 30, 2012 | Diagnosis, Doctors
For so long now I’ve been trying to get an MRI, after my mobility vastly reduced over the past few years. Luckily my specialist consultant agreed, and asked my GP to get one done locally. My GP told me it showed a few issues Limited marrow oedema (degeneration in the joint cartilage) in L2 Moderate degenerative changes at L4/5 and L5/S1. Moderate sized disc bulge at L4/5 which along with ligamenta flava hypertrophy (enlarged connective tissue) caused by facet joint arthritis on both sides, which has resulted in acquired central canal narrowing (12mm instead of 16mm) L5/S1 moderate broad based disc bulge causing an indent in the thecal sac. This has reduced the central canal measurements from the expected 17mm, to 11mm. Synovial cysts are on both sides of the facet joints at L5/S1 level. However, locally – I’m still getting nowhere. My GP referred me to a spinal surgeon to discuss this, but in my area we have a ‘spinal pathway’ – seemingly controlled my physiotherapists. Even having my results upfront, they still want a physiotherapist to carry out a physical assessment, which isn’t going to tell them anything! After waiting eight weeks for this, I went back to my specialist consultant at the Royal Orthopedic Hospital, who agreed to refer me to a surgeon there, so I can actually discuss my options (if any). But, it at least explains why I can’t walk far – both the spinal narrowing, and facet cysts would cause this issue and can’t be solved with the hand wave ‘just exercise more’ than doctors... read more
Sep 10, 2012 | Diagnosis, Hospitals
I was told me to get to the hospital at about 5 to prepare for my MRI at 5:25pm. I immediately began to be concerned – I was having a high pain day, and one problem with an MRI, for those who are new to them – you have to keep completely still. If you move they will start the whole thing again. And anyone who knows me (or anyone with chronic pain!) will tell you – I can’t keep still. I personify a fidgeter. I took every painkiller I could, and arrived at 5pm, parking in a blue badge space next door to the MRI centre, which was a great bonus as they were normally full. This meant I didn’t have to faff around getting my wheelchair out, as I was literally two steps away. I was given paperwork to fill out, and immediately had to answer yes to a ‘red flag’ question – are you wearing any medicine patches? The lady informed me I would have to take it off. Oh. You mean the patch that was brand new on that morning, that’s meant to last me another four days and if I take it off means I will run out of patches four days early, causing mayhem to my delivery system, and will leave me without lovely morphine pumping through me at a time I need to lay down for half an hour and keep still? Apparently one person once had a reaction and it burnt her, so they now have to be taken off. I’m not moaning at this policy – I just wish... read more
Sep 9, 2012 | Diagnosis, Hospitals
The first part of the story can be found here. From 2008 onwards my mobility vastly decreased. I swiftly went from sticks, to wheelchairs, to sometimes a few steps being too much. The chiropractor I was seeing at the time advised she thought my facet discs may be getting worse, but wasn’t entirely sure. By this point I had a diagnosis of Ehlers-Danlos Syndrome, was aware one of the issues is that it causes joints to degenerate a lot quicker than they should as they are hypermobile and moving out of place all the time, which then in turn causes them damage. So it’s sensible to keep an eye on it, as you could technically end up crumbling away! Last year I brought up this issue to my GP. While I understood and generally accepted the condition, and the general levels of constant pain, I was worried about what was going on in my lower back which has been the worst pain I have for some time. She agreed with me it was a valid concern, but said she did not have the authority to send me for an MRI unless it was for a surgical reason. I pointed out that I was unsure if it was surgical until it was scanned, but as she could find no symptoms relating to a disc pressing on a nerve – which is not my worry anyway, there was nothing she could do. Instead she wrote to my two EDS specialists. One my specialists I really like – he listens in appointments, and makes lots of referrals. The other one comes across... read more
Sep 8, 2012 | Diagnosis
I seem to have had a few people in my life at the moment develop back issues. In all, or at least almost all cases they seem to have gone to their doctor, been sent for an MRI, been diagnosed and sent for treatment. That’s brilliant, exactly how the NHS should be. That’s not how it’s been for me. Sorry to bore those who’ve heard this before, but 10 years ago I started to get a strange pain in the joint between my neck and spine (that one that’s a little bump.) It began to crack, and feel really stiff. The pain spread into my shoulders and upper back. It then went into my lower back – badly. I began to not be able to stand as long as I used to, or sit comfortably. I fidgeted constantly, and my joints all began to loudly crack all the time. I didn’t know what the hell was wrong with me. The first rheumatologist I saw said I’d grow out of it. The second said it wasn’t arthritis, but didn’t know what it was. The next said I had bad posture – ignoring the fact I was hunched over due to the pain. In the years between 2002 and 2008, that pain spread into every joint, every muscle. The fatigue was getting worse. I could only walk for short periods of time. I saw rheumatologist after rheumatologist, and two different pain consultants. Each time I raised the possibility of an MRI, but it was dismissed. I finally saw a third Pain consultant in 2008. He was an asshole. It was the... read more
Aug 28, 2012 | Wheelchair
In July I got a new wheelchair as I posted about here. Sadly, it hasn’t gone so well and the company I got it from have been awful. I have phoned, written and begged the company for a replacement for over a year. Last night I post my temper and wrote to the CEO of Betterlife Healthcare. I hope this gets an answer. If it doesn’t – it made me feel a little better. Dear Mr Abrahams I am writing in regards to the on-going saga which can be summed up by the fact in July 2011 you sold me what you define as an ‘Aries wheelchair’ and I define as a ‘useless piece of rubbish that regularly breaks down, or regularly has pieces falling of it – interspersed with the most appalling customer service I have ever received from a company’. First of all, I’m not sure if you’re aware, but people who generally use wheelchairs either can’t walk, or find it difficult to. We generally rely on them, and find them quite important in our lives. I get the impression from your company you don’t understand this vital function by you way you have treated me over the past year, so I just thought I’d clear that up for you. On to the point of this letter – one of the many letters, emails and phone calls I’ve had to make over the past year. I agreed to you taking the chair away for an inspection, despite having taken a day off work a few weeks ago when you sent a technician to carry one out –... read more
May 27, 2012 | Access, Education, Vents, Wheelchair
Sometimes I have those days – although in my case, it always seems to happen in the middle of the night. One of those oh god why does nothing go right things? Sometimes I’m not sure why I’m so anxious, and why somethings become such a big deal. I’m currently trying to get my wheelchair replaced via grants, and in my desperate research to find any organisations that may actually give me any help stumbled across some research that showed people with Ehlers-Danlos are highly susceptible to miscarriage. It’s not like I’m anywhere close to having a child, or even know if I will have them – but if we didn’t have enough against us having children already. First is the high chance of giving the kid the condition in the first place – and it possibly being the ‘die early’ type, not just the painful type. Then there is the possibility of my hypermobility vastly increasing during pregnancy – to the point of constant dislocation, and issues giving birth with the pelvis. Then there is the issue of having to give up the morphine for nine months, or have the child be born addicted to drugs and have to spend the first few weeks going through withdrawal in intensive care. So the cherry on the top is that there is a good chance the baby won’t survive anyway. Fabulous. I don’t mean to feel sorry for myself, but I’m still learning so much about this condition. I’ve only been diagnosed with it for a year – and am still getting to grips with how it all works. Then back to... read more
May 23, 2012 | Coping Methods, Vents
If you ask a doctor how to care for a chronic condition, or read their guidelines, or even go in hospital for a month on an intensive-pain management course (just to be specific) the themes running through them all, their little buzzword, is self-care. I was reading the papers that have been created in the wake of the imminent closure of the PCTs by the doctors commissioning consortia whose priorities for the future are self-care, with aims to give patients the confidence to manage their conditions themselves. To be fair, this may help with some conditions where perhaps a specific therapy or medication keeps symptoms at bay, but it gets a little more complicated when it comes to complex conditions where pain and fatigue are two pervading symptoms, amongst many others, because there is no single treatment. There isn’t even ten treatments they can say hand on heart would help everyone with chronic pain. To be frank, it infuriates me to hear phrases such as ‘take control of your own treatment’ or ‘You have the power in your hands’ etc, etc, blah, blah, blah. What they don’t tell you is that you have to. Self-care, that is. Because it will make up 99.9% of your overall treatment plan. Oh, it may be occasionally the NHS will think of something – physiotherapy injections, uhh… more physiotherapy, that is if you kick up enough fuss. Otherwise, it’s DIY all the way. At the age of 15 I visited a Rheumatologist. He said I’d ‘grow out of it’. In the following years I was sent a couple of times for Physiotherapy, but... read more
May 22, 2012 | Daily Life
I see a queue and my heart sinks. Nothing to do with impatience, or having somewhere else to be. Nobody likes a queue, but I hate them. Do I really need to stay and pay for this item? I’ve used so much energy getting here, getting the item. The place wasn’t wheelchair accessible, so I’d made the gamble: to do the shop race. Get in, grab item, get out. It’s just a small shop, so no trailing down aisles. I’d got the first parking space, dodged the people milling around, and found the item I needed in record time. Then I turned the corner and saw the queue. My heart drops. I want to leave, but I really, really need it. It can’t wait. I have to get it today. So I join the queue with trepidation. And immediately it begins – the ache intensifies, solidifies into an unmistakable gnawing, right in the bones. I eye the people in front of me, judging them. That one’s near the front and hasn’t even got their purse out, one of the cashiers yawns. Hurry, hurry, I plead. But they continue leisurely, with all the time in the world. The pressure begins, and I’ll soon by at my point, my limit. I begin to sway from foot to foot, trying to ease the pain. But it builds, and they continue to amble on. I begin to plead with them in my head. Please leave the queue. Please see I have just one item and let me go first. Please. I know this won’t happen – why should they? They are in front... read more
May 9, 2012 | Education
What do you think of ME? That condition people have when they don’t want to work? Yuppie flu? We are all tired – so stop whinging? The medical community and the media has portrayed a certain image of ME that doesn’t live up to reality. Did you know ME is actually a neurological condition similar to MS? That people regularly die from it? Some years ago the condition was renamed in some circles as ‘Chronic Fatigue Syndrome’ and pedaled as a mental illness – which couldn’t be further from the truth. Many activists are now trying to divorce the two conditions. Chronic Fatigue seems to be a catch-all for long-term fatigue to which no other cause can be found, yet ME is testable, and so much more than fatigue. I don’t normally link to The Mail, and in some ways I find this article funny, as they probably wrote 90% of the articles calling people with ME lazy, job-shy malingerers, but it’s a good look at the myths of... read more
Mar 27, 2012 | Access, Daily Life, Trips Out
One thing that still bothers me after all this time of having mobility issues, is the problems that visiting new places brings. I’ve just spent the weekend in London as a birthday/Mother’s Day treat for my mum. Trips like this involve a lot of planning. One particular issue is finding close parking, but it’s pretty hard when London’s involved as it’s such a maze. Even having parking near enough doesn’t mean there will be dropped curbs, or that the wheelchair won’t get stuck, or the battery won’t run out, and many of these issues you can’t plan away. On Sunday we went to the Ideal Home Show. Online a ticket was £14, but because we needed a carers ticket, you couldn’t purchase it in advance so we had to pay on the day – now £18. (Strike one!) The Earls Court website informed us there was plenty of free blue badge spaces close to the entrance – great! This helps with the dropped curb issue (which doesn’t just happen in the middle of nowhere, it happens all over the place.) We arrive to find a whole row of blue badge parking, except every single one is cordoned off. Not filled, which we’d just have to live with – just roped off for no reason. The car park is available though, they tell us with a smile, but it charges by the hour. Having a wheelchair takes a lot longer to get round things, so that added an extra £25 to our day. (Strike two!) The car park is at the back of the building – so getting to the... 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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