by The Chronic Chronicles | Dec 16, 2013 | Coping Methods
When you’re in constant pain, it’s very easy to focus on it. It can become all-consuming, and the more you think about it – the worse it feels. Someone once suggested to me that I try crafting as a means of distraction. I have to be honest, I was a little annoyed – how would painting a pretty picture take my crippling pain away? It seemed a little dismissive. Plus there was also the fact I’d never thought of myself as a particularly creative or artistic person. At school even my doodled stick figures ran screaming in terror, and my art teacher made it clear it wasn’t my forte, but I thought I’d give card-making a try.
I enjoyed making them, but they weren’t that great. I’d look online at all the beautiful designs people were creating, and it just didn’t feel quite like me. After I’d spent a fortune on card-making supplies, I decided to try my hand at jewellery instead, and in doing so found a new passion.
Stargazer Watch
The early days of making jewellery weren’t easy – my hands cramped up terribly, and I was left with blisters all over my skin. In time my dexterity improved and it helped strengthen some of my muscles in my hands. And it was true – when I’m busy concentrating on making a new item, my brain is focused elsewhere. It doesn’t make the pain go away, it just redirects my attention so I’m not thinking about it, which is really helpful.
Once I joined the world of crafting – I found more and more other people with disabilities were also there, and finding an outlet in art – by painting, woodwork, ceramics, photography or anything in-between. For example a friend of mine makes ‘pain monsters’ from felt when she’s having a bad day, which helps her create a visual representation of what she’s feeling.
It took me quite a long time to find out what was wrong with me. Many years of fighting and pleading with the medical community to stop shrugging their shoulders, and to do something. When I was told I had Fibromyalgia, it came as something of a relief. I felt like I wasn’t alone – there were other people with this stupidly long list of symptoms out there. I wanted to commemorate the end of that fight, that also informed people about the condition. I made my first Fibromyalgia awareness bracelet not long after, and then began to receive requests to create ones for other conditions – including some I’d never heard of before. People liked the more personalised feel to the more generic rubber bands that are usually sold. My biggest seller was for Marie Charcot Tooth Disease, and eventually the national charity began to order from me so they could sell them on their website.
I also auctioned lots of my bracelets off for the Fibromyalgia Association UK, and also for Ehlers-Danlos Syndrome related charities when I was diagnosed, a genetic multi-systemic connective tissue disorder. It made me feel like I was helping, even in one tiny way.
An Ehlers-Danlos Syndrome bracelet featuring zebra stripe beads – the symbol of the condition
It’s very common to walk into a shop and see a row of pink coloured items for Breast Cancer awareness. Yet there are so many other conditions that people often haven’t even heard of before, let alone understand what they entail and what it’s like to live with them. People have often told me when wearing one of my awareness bracelets it has sparked conversations with friends and family who had never asked about their health before.
Fibromyalgia Awareness Bracelet
Fibromyalgia Awareness Bracelet 2
The colours of the bracelets are usually picked by the existing awareness ribbon colour, and if there isn’t one, then by the colours of the national organisation/charity for the condition. Sometimes there are obvious symbols that can be included as charms. Fibromyalgia often has an association with butterflies, Autism with jigsaw pieces, Charcot Marie Tooth Disease with hands and feet. Sometimes a spoon charm is added from the fantastic analogy “The Spoon Theory” by Christine Miserandino, to which many people with chronic illness resonated with. My most commonly used charm is simply a silver ribbon with the word hope written on it – as I believe that’s something we all need in some form or another.
Arthritis Awareness Bracelet
In April this year I had to stop working due to my health continuing to get worse. Being able to make jewellery – even if it’s for twenty minutes in the middle of the night when I’m struggling to sleep, has helped keep my spirits up and creativity flowing.
If you’re interested in seeing more of my jewellery and awareness items you can find me under Sparkly Place Jewellery on Facebook.
by The Chronic Chronicles | Oct 1, 2013 | Doctors
I’ve just started with a new Osteopath. I’ve been through so many therapists that I try and get a recommendation from someone I know first – which I did with this osteo. But on my first visit he announced he was off to Asia until March, so could only see me one more time.
Today he assessed me further alongside the osteopath who I’ll be working with in the future.
He pointed out my arch has fallen, and my left foot is falling inwards – which pulls my knees automatically into hyperextension. He suggested this would be putting a lot of pressure on my lower back. He also pointed out my mid -spine area is very hypermobile, but my lower back is locked solid – also putting additional pressure on. My hamstrings are very tight, as is my sciatic nerve. So there’s a few things to start with.
Tomorrow I’m seeing a Pain Specialist at the Royal National Orthopaedic Hospital in Stanmore, Middlesex. The consultant isn’t an Ehlers-Danlos Syndrome specialist, but the EDS consultant at the hospital often refers to her, so she sees a lot of us.
I’ve been putting together some information on Ketamine or Lidocaine infusions to discuss with her, along with research on EDS-related sleep issues and hope to also be referred for Lumbar Facet Joint injections.
I get very nervous before I see a consultant, especially when I feel it’s a ‘last hope’ appointment. I’ve had some really bad experiences with the pain consultants at my local hospital, and I’m hoping seeing someone with an understanding of the complexities of EDS is going to make a difference.
I’ve also booked in for my flu jab for a couple of weeks. I dread them, but the thought of it is usually worse! So just a reminder for all of you who has to have one yearly – winter is coming!
by The Chronic Chronicles | Aug 27, 2013 | Daily Life
In my next life I shall be a cat who sleeps anywhere.
I was settling down to go to sleep the other night, and putting my joints in the right positions – and it made me think about how much effort I have to go to at night to get it right. Most people jump into bed, lay in whatever their favourite comfortable position is and go to sleep. But for me, a lot of thought has to go into it, and it still often goes horribly wrong!
First of all it’s all about placement. I have to make sure no joints have too much pressure on them – particularly my hips, knees and shoulders. Sometimes it’s a no-win situation, for example I have to sleep on my side, and if I lay with my shoulder underneath me then the pain builds. However, if I pull my shoulder forward to take the pressure off – it’s likely to subluxate or go into spasm.
Many of my joints have to be bent – particularly my elbows and knees, otherwise they will lock in hyperextension (this is when the joint goes past its normal range of movement) and ‘freezes’ in place. When this happens I have to warm the joint up, and then slowly, and very painfully force it out of hyperextension and fold it back into position. It will usually throb with pain sometime after this.
However, other joints must not be bent, including wrists, and fingers, otherwise oddly they too will freeze in this position. Last night I ended up in a lot of pain because in my sleep the top joint of one of my fingers had bent. The pain in just that one tiny joint woke me up and kept me awake for some time!
Most importantly – with any joint, they cannot get left in the same position for too long, or I’ll be in for a world of pain in the morning. So I have to wake up regularly to turn over, and move each joint in turn. Often a joint gets locked up – usually one of my hips – and I have to turn over and try and drag it over with me which is more difficult than it sounds.
In addition, as anyone that knows me will have seen and heard – I’m always having to crack my neck. This continues throughout the night – with the pressure in the joint building up until it wakes me, and I have to crack it all out which you can’t do very well lying down.
Sometimes trying to solve one issue causes another. For example putting a cushion between my knees help eases my lower back pain slightly. However, on day three of using this cushion I get absolutely horrendous hip pain that leaves me unable to walk.
No matter how carefully I try and keep in the right positions, my fidgeting continues into my sleep and that causes a lot of problems. I cannot sleep on my back, at all – but sometimes this happens, and in return I wake up screaming with burning nerve pain shooting down my leg. I also frequently get cramps, or muscle spasms that make me jump awake.
This is just a normal night – often I have an injury, or a flare up in a specific joint that throws everything out.
So you wonder why I’m tired? People with Ehlers-Danlos Syndrome struggle to get into the final REM restorative stages of sleep. We also tend to wake up naturally hundreds of times a night. On top of that, I suffer from insomnia – and often don’t get to sleep at all until 6:00am – 7:00am.
So no, I don’t do mornings.
Fellow EDSers – do you relate?
by The Chronic Chronicles | 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 as slightly dismissive, and mostly spend her time trying to get me to lessen my painkillers – which wasn’t going to happen, after finding my current regime the best I’ve had so far. The problem with the first specialist is that he doesn’t seem to respond to GP letters. I realise he’s busy, and should have retired years ago – but local doctors just don’t have the skills and knowledge to treat EDS most of the year, and we shouldn’t have to wait for a check up just to get a simple question answered.
The second specialist did come back, however – to say she felt the answer to my issue was exercise. I have to say my letter back her from my GP and I wasn’t particularly polite. Oh, exercise! Silly us! I’ve done all the bloody stretches and exercises they have given me, and it’s ten years later and my lower back is simply getting worse. This is not an issue to simply dismiss as ‘have an exercise sheet.’ I have to say all my trust in her immediately evaporated at that response.
My GP then tried again to a local Pain Consultant. I have to say I’ve never liked this pain consultant. I saw him before I had a diagnosis, and he seemed to immediately take against me because I’d already tried the suggestions he normally makes to patients (acupuncture and a TENS machine… Yep, that’s it.) On my first appointment I asked him if he thought it may be Fibromyalgia, and he responded, “You can call it that if you like, but I don’t as it’s too American.” On my second appointment he said I was on too many painkillers, and that I needed to come off one of the painkillers. On my third appointment he said I wasn’t on enough painkillers, and upped my morphine dose.
But I still wasn’t expecting the response I got back from him that stated in black and white that to give me tests/injections into my spine would be “medicalising her condition, when she should be seeking psychiatric help” or something to that effect. He also seemed to have forgotten I have a diagnosis Ehlers-Danlos Syndrome, and stated my condition was Chronic Pain Syndrome instead.
Luckily, my follow-up with the first specialist was due a few months later – and he agreed with me I should have an MRI, as we don’t exactly know what the issue is – whether it’s something that’s got worse, or something new. The bad news is that they are transferring existing EDS patients from my preferred hospital of UCL London, to Stanmore – therefore losing him as my specialist, and making the other one my primary.
Two weeks ago my GP phoned to say now that my consultant has agreed in regards to the MRI, I can now go on the waiting list! I wasn’t sure how long they were taking, and hadn’t heard anything when couple of weeks ago I received a phone call from the MRI department asking if I was aware I had an appointment in a couple of hours, as I had yet to confirm it. Um, no, I certainly did not. I thanked her profusely for calling me, if she hadn’t I would have gone down as a Do Not Attend – and gone to the back of the waiting list at best, discharged at worst.
by The Chronic Chronicles | Jan 28, 2012 | Hospitals
I wake to find my pain on the ridiculous side. My right arm is in spasm and I can’t move it much. My left knee is also being difficult, and generally the rest of my muscles are all moaning at me. The pain is a lot higher than my usual constant pain. The weather is miserable, which I guess it apt, but I worry about my wheelchair as I’m never quite sure how waterproof it is!
First up is stretch, which is okay. I would enjoy it if it wasn’t at 9am, and I tend to be quite dizzy for the first few hours I’m up. Straight afterwards I have a gardening session, which I enjoy. Viv, the lady who runs it is really nice and chatty, and I re-pot some interesting looking plants that are going to be put into baskets to be sold later in the year to raise some money.
Credit to: Colin Broug
The next session is Maintaining Change, run by one of the psychologists. We talk about reasons to keep going, and what may sabotage us. One thing that’s discussed are lapses and relapses. Lapses are where for example if you’re giving up alcohol, you have a drink , but then get back to it. A relapse is where you have one or two, think oh bugger it, I’ve ruined it now, and start drinking every day. Someone then suggests if you miss a gym session, but then rearrange it for later that day, it’s a lapse. I think bloody hell, I’ve got no hope if you’re going to be that stupid about it! (To me that’s rearranging, not lapsing.)
I then have a physio session with the student assistant, as my physio hadn’t left enough space for my session when booking them. I’m have to say I’m hesitant. She’s not qualfied, very quiet and unsure. It’s nothing against her personally, but it’s my last week I for some reason only two physio sessions have been booked, and one is being used as a training session. To me, the physio sessions are some of the most important. It’s not often you get to work with someone who has an understanding of your condition – and physios usually just give out exercise sheets.
My session consists of her trying to get me to walk around the gym, although I have to explain I’m having a flare up and it’s not going to be the best day for it. She spends much of the time with her head in my file with her plan for the session. I have to say I’m glad when it’s over and I hope my final physio session is better.
I also notice that my usual timeslot had been given by my physio to the older lady that had been causing a lot of problems in the ward. She doesn’t have a chronic condition – she has arthritis in one hip. It had been a cause of friction on the ward, as she’d been making comments to people when they’d had to rest after physio sessions or sleep during the day, along the lines of accusing people of being lazy. We’d all very patiently tried to explain to her that having one painful area is very different from a chronic illness where you’re constantly juggling tiny amounts of energy, and having to pre-plan everything you do. She’d reduced a number of people to tears.
She is also a very fit and healthy lady, who can walk miles at a time and even the pain in the hip was intermittent. So I have to admit I was frustrated it was her session mine was forfeited for, although it’s obviously not something you can say.
Next I have a dreaded cooking session with the one instructor on the programme that not one person ever had a good thing to say about. She’s patronising, and rude and takes things too far. She has no idea about EDS, and where as my OT is trying to build up my posture slowly – she whines if I move out of place once.
The cooking session is meant to give me strategies to help overcome the pain and fatigue is causes, but I end up really fed up. She keeps telling me how to cook, instead of looking at ways to help me (I know how to cook, thank you!) When I finally finish – having had to use just my left arm all the way through, which isn’t very easy when you’re right handed, and my pain not great – shaking with pain and fatigue, she says well you’ve got past the barrier you have against cooking now, so you’ll be able to do it from now on. Oh yeah, problem solved!
I crawl into bed straight after, but struggle to sleep – probably because I slept between every session I could as I felt so rough. This means tomorrow will be a bad day, as I just flounder under a lack of sleep.
The last few days blur together in a sea of fatigue. My final physio session ends in disaster as I spend the whole session in tears, due to the fact the walking issue keeps being pushed.
The programme wasn’t quite what I expected. Had I gone on it ten years previously the strategies may have been helpful. But now, ten years later – when I’ve had to put my own coping mechanisms in place I find the tone quite patronising and a lot of the staff unhelpful.
The major flaw of the timetable for me is that at home I’ve come up with ways that mean I can function at times – by resting at others. For example I don’t tend to do things in the morning, and if I’m doing something physical like an appointment or event, I rest the day before. The programme turned this on its head – with early starts, and a lack of rest times. This meant that I spent a lot of the time coping with flare ups, which goes against the principal of the skills taught. It also meant my attitude became quite negative and ‘moany’ as I couldn’t deal with the amount of energy needed just to be there.
The two things I loved about the programme is that I met some really awesome, inspiration people who I can count as friends. They got me through the bad times, and I hope I helped them through theirs. It was the first time in my life I’d met people with the same condition as me – something really hard to explain to those with no condition, or a more common one. You feel less alone in the world. The second thing I loved was the fully accessible swimming pool! I miss swimming a lot.
