Frustration. Credit to Staci Becker
I don’t tend to cry. I mean – give me a sad film, or book and I’m sobbing like nobody’s business. But in pain, randomly when it’s all just got too much? Not that often. (Although let’s take my last year of work out of the equation, because dear god I was a mess.)
But I have cried in my last three appointments, and all three times it was around the same topics. Frustration at the “system” and exercise.
The last few months have been tough for me. My condition seems to have gone into haywire, insomnia has struck big time, my pain levels are pretty damn ridonkulous and I’ve been pretty much stuck in the house. It’s always tough when you have a flare up, because of the fear this is your new reality. This is the next downward slide, on a slide that’s been pretty slippery for the last eleven years. At the same time there has to be hope. Sometimes I pin it on myself – I’m going to try this supplement, and do these new stretches eight times a day until every muscle in my body is strengthened and then…
And then I’m doing the most basic of basic stretches, and put my joint out, and I’m lying on the floor with half my body shaking in spasm, trying not to throw up and thinking if I can just make it back to the sofa and not move for five days, it will be okay.
So then I pin that hope on others. That I’m going to go to the physio and they’ll give me as much Hydrotherapy as I need, and then I’ll see the pain consultant and they’ll read the research I’ve found around a specific new medication that looks really promising and will give it to me without a fight, and then…
And then I’m sitting with the physiotherapy who is giving me the lecture that they don’t have infinite resources, so I can have one more block of hydrotherapy next year, and then that’s it. I’ll have to find somewhere else to go, and I’m trying to explain there is nowhere else, nowhere accessible, nowhere affordable, and I’m crying because I just want them to say yes, no problem, for once.
And then I’m at the pain consultant – the one that’s meant to work with people with Ehlers-Danlos Syndrome a lot, except she’s getting the most basic elements of the condition wrong. She does read the research I push at her, and she turns and says – “Yes, we do this here.” There’s a pause, my heart races. “But not for people with your condition.” And then she’s lecturing me – you need to exercise, and push through the pain, it can’t be that bad. And I’m trying to tell her, explain that I’m not talking about aching muscles the next day after a session at the gym, but agonising and consuming pain, partial dislocations – bedbound for days, and I’m crying because she doesn’t get it.
And then I’m at the osteopath, and she has her elbow in my lumbar spine, and she says, “Have you considered exercise?” And I sigh internally, but politely try to explain the same old issues, that I do exercise – but it has to be extremely limited, and she’s pushing it and pushing it until the tears are there again and then she’s backpedalling, and sorry.
It’s so frustrating, I hate crying – and on their own are such minor things. It’s the build up of it all, the feeling they’re just not listening.
But I need to wipe my tears, because it gets me nowhere, and push on with what I can. I’ll get there.
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!
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 it didn’t make the slightest bit of difference. The NHS then gave up, and in desperation I saw chiropractors, osteopaths, acupuncturists and electro-acupuncturists. I tried the many sheets of exercises and stretches, swimming and pilates and a GP referral to the gym (that I paid for) which put me in bed for two weeks. I then started the ‘alternative’ stuff like the Alexander Technique to improve posture, the Bowen Technique which seemed weird and pointless. I saw Kinesiologists and had relaxation sessions. The only tiny bit of relief came from the many thousands of massage treatments I once again paid for.
I’ve researched madly, kept up to date with papers on pain, studies on medication, and constantly visit the doctor with a new research paper in hand.
I even diagnosed myself – after years of consultants shrugging their shoulders at me, I kept searching and searching until I finally realised what was wrong with me, and then fought to see consultants in London who finally knew what they were talking about.
I now can only exist and function from a mixture of massage and adjustments, which takes the edge off – maybe 5-10% at best. But it’s an important percentage.
In the ten years I’ve been madly trying anything and everything, the NHS gave me one set of facet joint injections in 2008. Some muscle injections in 2011. And six sessions of Hydrotherapy – but I had to fight for them all.
The thing I find infuriating is that no one tells you exactly what IS available. I had severe back problems for ten years before someone said to me there was a spine clinic in my town for people with long-term back issues. Do you really have to hit the ten year mark before they go crap, that is long term for a twenty-four year old?
When you get a diagnosis no one gives you a handbook and says here is what the Pain Clinic offer (if they deem you lucky enough to offer you anything at all) or let you know you can see Osteopaths and Chiropractors on the NHS. Or any other of the treatments they may have available. You have to wait until you stumble upon it yourself.
All they do is hand out painkillers (again, if you are lucky) and tell you self-care is the way it should be.
Sometimes I want to say you know what? I’ve self-cared. NHS – it’s your goddamn turn. I’m just too tired.