I have pain all over the place, but ranking at the top of the list is my lower back. I’d previously had facet joint injections in my neck and shoulders some years ago, but they didn’t help. However, it was before I’d had an MRI (as it took around 8 years of arguing to get one) and so the consultant was ‘guessing’ at what the issues were. Later on the MRI did clearly show an area in my lower back that had degenerative lumbar disease in the facet joints, arthritis, and others issues. It made a much better target for injections than anywhere else, so I thought it was worth a try.
It took another few years of me arguing for them (nothing ever just seems to just happen on the NHS!) After getting nowhere locally, my Ehlers-Danlos specialist at the Royal National Orthopaedic Hospital at Stanmore sent me to see her Pain Management college, who gave me the go-ahead for bilateral lumbar facet joints at L4/L5 and L5/S1 (so four in total).
A few days passed after being told I could have them and suddenly I thought – what the hell am I doing fighting to have needles put into my spine?! I was sedated during my previous injections, but I did have some memories of the procedure. I remember my consciousness kind of returning and thinking ‘please stop now.’ I was later told the sedation didn’t actually knock you out, but simply wiped your memory – and that you would be aware of what was happening as they did it. This memory built up in my mind until I was convinced I’d be strapped down with horrible painful injections into the middle of my spine, then I’d just forget afterwards so I didn’t realise how awful it would be. So I was about 500 times more nervous for these injections than previously.
The whole topic became a ‘do not discuss’ subject. As soon as I thought about it I went into a state of panic, so there was no research done as I normally would, and I didn’t even allow my mum (who accompanied me) to talk about our arrangements of getting there until the day before. I just wanted to block it totally from my mind.
We travelled to Stanmore the day before for two reasons. The first that I can’t make the journey there and back in one day, and the second was that my admission time was 7am. Ugh!
Although I wasn’t having general anaesthetic, I was told not eat after midnight, and no drinking after 6am. It was the latter I’d struggle with as I’m constantly thirsty.
I arrived at the hospital a couple of minutes before 7am and had a choice of parking for the first time ever! When we reached admissions there were a few people waiting outside, but when the queue got the doorway I realised the room was packed with both people queuing, and waiting in the chairs. It wasn’t the easiest getting my wheelchair in and out with no room for manoeuvring. There was only one member of staff dealing with everyone. The older lady in front of me didn’t speak any English, and was soon joined by an interpreter. The staff member made a phone call and I heard him say, “Are the wards still closed, there are a lot of patients here?” He then informed the interpreter they had a bit of a wait ahead. I was next, and was told the same thing.
I was a little cross, only because getting somewhere for 7am isn’t very easy for me and more importantly 7am = grumpiness! I did later found out the wards were opening for the first time after being closed for two weeks over Christmas – so I assume the delay isn’t normal.
I reached the ward and was met with a number of friendly nurses and health care assistants who welcomed me, and showed me my bed. The lady with the interpreter was in the bed opposite me. A nurse admitted me with a huge pile of paperwork, most of which seemed irrelevant in my case! I was asked a couple of times if I had any allergies. She then took swabs for MRSA and then took my blood pressure (which I hate, as it’s very painful. The muscles in my upper arm are very tight and particularly sensitive). I was told I was third in the queue – and the doctor would be seeing me beforehand.
A couple of other patients got in the bed and went to sleep, which seemed like a good idea – and would also make the time pass. However every time I was about to drift off I was woken by someone. The first to measure me for pressure stockings, then again to tell me I didn’t need them. Then a doctor who was working with my consultant arrived to explain the procedure. I was glad it was her and not my consultant as she was much warmer than my consultant is, which helped. She spent a lot of time explaining how much time they took to sterilise everything to reduce any chance of infection. I wanted to rudely interrupt and say that at that point, I didn’t care – I just wanted her to promise she’d knock me out! She then went through the possible risks – infection, numbness in the legs, pain flaring up afterwards and in a very tiny amount of cases nerve damage. She asked if I had any allergies.
Finally I could ask the one thing I wanted to know.
“You will be sedating me, right?”
“Did you ask for it before?”
“Yes,” I emphasised.
“Then we will.”
“Will I know what’s happening?”
“Well, some people do sleep.”
“Please make that happen with me. Please.”
Then the pharmacist came to take note of my list of medications, and asked whether I had any allergies, then a number of nurses came to tell me, “It won’t be much longer.” Then that they were on their way for me, only to still be there sometime later!
Eventually the porters did arrive and wheeled me into theatre. A nurse went through the final questions – checking I knew what procedure I was having, if I’d had any before, if I had any allergies and if it was definitely my signature on the consent form. The nice doctor then fitted the cannula into my hand, before I lay down front-first on the table. They put an oxygen mask on me, a clip onto my finger to measure oxygen (I’m sure that has a proper name) then to my annoyance – a blood pressure cuff which I was told would be taking my blood pressure every few minutes. It took it twice, before I told the nurse how painful it was. “No problem,” she told me cheerfully, and moved it onto my leg instead which was much better. She then began chatting to me about my hobbies and jewellery making, before my consultant began putting the sanitising fluids on my back. The nice doctor then began to input two injections of sedation into the cannula. I closed my eyes – trying to relax. She then asked if I could still hear her, and I said yes. She thought I’d gone to sleep, and I said I hadn’t felt any sedation yet. She said she’d keep going, and added two more tubes.
The next thing I remember is feeling a bit of pain in my back, and a nurse telling me it was all over. I definitely hadn’t been aware of it. I was taken into recovery for awhile, still very sleepy and groggy. A nurse chatted to me for awhile, and I remember telling her to say thank you to the nurses, as they’d calmed me down a lot beforehand. She promised she would. She then asked if I knew which ward I’d been in.
“It began with J…” I answered.
“Jackson Burrows is the only ward beginning with J.”
“No, it wasn’t that. Was it Diane something?”
“I guess now wasn’t the best time to test your memory?” she laughed. She then came back and said that unfortunately they’d moved me to Margaret Harte Ward. I began to worry if anyone had told my mum as I knew she was planning on getting a cup of tea while I was in the theatre (as she’d very kindly not eaten/drunk anything in front of me while I couldn’t).
As the porters wheeled me out of recovery, the nurse suddenly called for them to stop. She dug through a cupboard, and pulled out another blanket to put around me. “Sorry,” she said to the porters. “I just didn’t want her to get cold on the way back.”
When we got back to the ward I spotted my mum very quickly and realised it was the ward I’d been in all along! The nurse handed over to the ward nurse, and said that my blood pressure had risen quite a bit during the procedure, so they needed to keep an eye on it. Argh, more blood pressure checks!
I was left to sleep for a bit as I slowly came round. A nurse then came round to do the blood pressure test. I admit I groaned, and said the test was hurting quite a bit, then of course after gritting my teeth the machine malfunctioned. Just one more time, I was told. Luckily it was back to normal, and as she took the cuff off she realised lots of red marks had come up all the way round (which are still there today!). She gave me an apologetic pat. I asked if she could take my cannula out as it was pulling quite a bit. She took a look and said it was quite red, and that someone would do it before I left. (Well, one would hope so!)
I was told to stay until lunch time, and then I would be discharged. The nice nurse who admitted me then walked past and so I asked her about the cannula, and she said no problem and took it out. She also checked my ‘wounds’ (just slightly larger than needle marks) and said she was happy with how they looked.
Still waiting opposite me was the older lady with the interpreter. I heard a nurse say to her that her operation wasn’t going to be until mid-afternoon – yet she’d been admitted at 7am! It seemed mean to make her wait so long, and I assume the NHS had paid extra for the interpreter when they could had admitted her at the 11am or 2pm admission times. I noticed the little old lady chatted non-stop to her interpreter, which made me smile as I could just imagine in the 7+ hours the interpreter sat with her she got to hear her entire life story.
I left at 1:40pm, slept all the way home, slept all afternoon and very unusually for me – all night!
So all in all – it wasn’t nearly as bad as I dreaded. The staff – particularly the nurses, were lovely. There were lots of touches of kindness, like the nurse in the theatre distracting me from my nerves, the recovery nurse chatting to me as I came round and making sure I was warm, and the staff back on the ward who took care of me and offered me toast and regular drinks when I came round. They all made it a much easier experience. Also – the NHS really, really want to know if you have any allergies.
I’m in a lot of pain now which feels different to my usual pain. I was warned I may flare up, particularly where the needle touches the bone – so I’ve no idea if it worked yet. I think I need to wait for all of that to calm down over the next couple of days before I can tell if it helped.
An image of a facet joint injection
I stumbled across the treatment of ‘infusions’ sometime ago, and then kept seeing them being mentioned. I began to try to find out more about them, but information was limited.
I was aware it usually consisted of either Ketamine or Lidocaine being given by an IV, and for some it works really well for pain relief. For others it seems to do nothing at all.
Eventually a friend kindly offered to search the academic databases he had access to and sent me all the research he could find. They were generally all positive.
‘Intravenous Lidocaine: An Outdated or Underutilized Treatment for Pain?’ by Gary McCleane stated, “The drug is administered over a relatively short period of time and yet the potential relief lasts significantly beyond both the period of administration and the plasma half-life of this local anesthetic.” He goes on to state that, “an infusion over a few hours can produce relief that extends to weeks and even months. Consequently, side effects, if any are apparent, are short lived and last for a much shorter time than the pain relief.”
McCleane explained that for many patients undertaking this treatment it becomes their only form of pain-relief, and they’re able to stop all other medications for pain. A trial of 82 patients found that 82% had a very good pain reduction after their infusion. In a second study on people with Fibromyalgia it was found that 40% of patients had between 13-18 weeks of relief.
A second study called ‘Efficacy and adverse effects of intravenous lignocaine therapy in fibromyalgia syndrome’ concluded that the therapy “appears to be both safe and of benefit in improving pain and quality of life for patients with fibromyalgia.”
The one downside is that there wasn’t much research on the therapy, and when a study had taken place they had very small sample sizes. There are also side effects such as hypotension, tachycardia, infections and other such fun times.
I began by asking my GP about them, but she’d never heard of them. I asked at the various London hospitals I’m under, but was told they didn’t do them. I came across a number of people with Ehlers-Danlos Syndrome who’d had them, but it was never at a hospital near to me.
I then visited a pain clinic in another town but they too stated they didn’t do them, and if they did they wouldn’t do it for Ehlers-Danlos Syndrome as there weren’t enough of us with it. (Red flag to a bull!)
I then changed GPs, and she too hadn’t heard of them – but a few weeks later I got a phone call from her. She explained she’d just had a patient in to see her who’d just had infusions at the hospital in my own town! She told me to come and see her, and she’d get me referred.
I saw a consultant at the pain clinic last week and she agreed I could have one infusion. I’m not sure why just one, but still it’s good news!
I’m also due to have facet joint injections in January, so there are two treatments coming up that allow me to have some hope.
Credit to: andyk
The next step in my quest for facet joint injections, is my GP. But this time when I tell her what I need, she hesitates. Normally she would send me to the local Pain Clinic, but she’s aware my opinion of the clinic is somewhere around… mud. And that’s being polite.
But there must be other pain clinics, right?
So she has a look on the system and it shows a few I can pick from. There’s a hospital nearby with a reasonably good reputation, and she agrees to send me there. She tells me she’d be really interested to know how I get on with them, as it would be great to have an alternative to send people to. Translation: she has issues with the local pain clinic too, but can’t say so.
I’ve been seeing the pain clinic for some years now, and I have to say the treatments/suggestions they offer haven’t changed a bit. The latest medications, research and techniques don’t seem to reach them, so I’ll be really interested to see what the new clinic has to say.
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 they’d have mentioned it as I would have held off putting it on and wasting £70 worth of patch.
I’m then informed I’m in the mobile scanner, which is on the other side of the car park. At the look on my face, the receptionist kindly offers to call me a wheelchair, and I take her offer thankfully. At 5:30pm a lady arrives, who has a limp, and is told she needs to find me a wheelchair. She returns dragging a battered looking thing which she can’t get to move. She limps off to find another wheelchair in the hospital – and returns with a chair that needs to be pulled backwards. The rain is now pouring down, and I look longingly at the people going into the next room for the MRI as I’m pulled out the room backwards, by a lady who looks like she needs a wheelchair too, into the wet, cold car park.
We don’t make it very far – she pulls me straight into the tunnel that joins the two parts of the hospital up, and then says she is going back for an umbrella, and leaves me. A grumpy looking security person comes along and closes all the doors around me, before I can protest. Limping lady arrives back and isn’t happy that she now has to try and get a wheelchair through a couple of sets of closed doors. Her umbrella blows inside out, and she gives up. The receptionist appears and takes over the pulling duty, and they take me to the other side of the hospital. Lucky for them – I can walk a few steps, because the mobile unit they have sent me too isn’t accessible. I’m told to stand on a lift in the pouring rain – which isn’t big enough for a wheelchair, and they send me up. I get even more soaked and cold while she shouts through to the other side to try and explain how they open the door to someone who can’t find the button.
I’m shaking by the time I get seated next to the person taking images, and can see the outline of a pelvis on the screen. They are all sitting in coats, and look cold and bored. I’m nervous – I’m soggy and about to go into a big electrical machine, but the lady assures me it won’t electrocute me! I’d spent the afternoon putting together a ‘relaxing music for an MRI’ CD to try and drown out the noise, so I get it out, but they tell me the CD player is broken. I’m struggling to breathe by now as panic sets in, so I puff on my inhaler before they take my bag away to lock up, and I take my patches off. I’m not scared about the MRI itself – just worried about them having to restart because I move. The other lady finishes and is getting dressed. I’m aware of this as the porter walked in on her doing so without knocking.
I’m ushered in next, although I’m told I can’t take my stick in and will have to use the bed to lean on – which is too low to be possible. It’s small and cramped. The lady with me doesn’t really speak English very well, and waves at the bed, and then raises it until it’s much too high for me to get on. She then sighs and says I was meant to sit on it first, but I hadn’t caught on what the random wave towards it meant. I have to take off anything that includes metal – but luckily I dressed to avoid zippers, etc. She tells me to lay down and put the ear plugs in. Every time I put them in, she then asks me a question – so I have to take them out, only for her to be asking if I’m ready.
She sends me through into the narrow tunnel, before she stops and says ‘Are you arms touching the sides? They are. She seems concerned, which makes me concerned – but she says, ‘Oh, I’m sure it will be fine. Just hit the emergency buzzer if you feel anything.’ She then leaves, and I’m wondering if I feel what?
A voice comes over the intercom to say they are starting, and I cannot move. I’m completely tense – they haven’t given me more than a couple of seconds to try and relax out and get into a comfortable position, and it’s off before I can do so. I then have to maintain the completely uncomfortable position – my muscles trembling and spasming, in my fear of moving and making them restart, therefore prolonging it.
I’m also worried about my arms. The time before I had an MRI I just tried to daydream, but this time my focus is on where my arms are touching the top. As the tube begins to warm naturally – as anyone would in a narrow tube, I worry about her definition of warm. Does she mean any kind of warmth, or if I actually feel it start to burn? I get hotter and hotter in there, probably as I panic.
I’m so glad when it’s finally over. They drag me back to the MRI centre in the backwards wheelchair, and leave me to get back to the car. Unfortunately I’m left feeling so dizzy, sick and in agony, I shuffle back to the car and almost collapse in. I’m left in excruciating pain for the night, even after replacing the patch.
So, that was my experience of my second MRI. I just hope it’s all worth it!
Next up: the results are in…
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.
I have a job interview next week, which involves a presentation (eek!). My work situation at the moment is dire, and this job seems perfect for me. I could have written the description myself. It involves planning a new service for older and disabled people – something I’ve been focusing on for some time in my current job and at Fair Access. I’ve spent weeks planning out and writing my presentation over and over. I have to map out how I’d carry out the project, my plan for sustainability and all my ideas.
But I’m due back to work next week, and both parts of the interview are on days I have to work (although luckily in the morning, when I’m due in at work in the afternoon.)
I’m dreading going back, it makes me feel sick. My employer hates me, and makes it obvious at every turn – because when they try and do something impacting my condition I don’t just say yes.
I’m fighting a battle with my local hospital as well. I’ve asked them to look into my lower back issues – as most other people with the same conditions I do, don’t have the same issues with walking that I do. Don’t get me wrong, people with Ehlers-Danlos or Fibromyalgia frequently feel pain on walking, or exhausted – but generally don’t have that strict oh my god the pain cut off point. There is an underlying issue there. My MRI (that took seven years of begging to get a) a couple of years ago showed some degenerative facet joints and arthritis, but both at a moderate level. At that point I could walk about 15-20 minutes. I can now stand for less than a minute. So my GP and I thought it very reasonable for them to look into it, maybe look at some treatment options (usually injections). But after a very dismissive assessment, they discharged me. I put in a complaint, and I got back the most ridiculous letter, once again dismissing me. So I need to keep battling them.
And finally, for a few days there seemed to be a bit less pain in my lower back, and thought it might be improving a little. And then it decided to say haha, you’re funny, and has been on fire for three days straight. I mean it always hurts, but this is just ridiculous.
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.
The day begins with a weekend review. This is everyone taking it in turns to say how (or how they didn’t) meet their goals we have to set each week. I didn’t meet a couple of mine, but I imply I did, as I don’t want to start the weekly with a lecture! I spent most of the weekend doing absolutely nothing, but hey what’s wrong with that after such a packed week?
Next up is Anatomy and Healing. It’s almost exactly the same talk from the week before. I hate it when they do this – they repeat some of them and they are mandatory to attend. The session runs better than the previous Anatomy one that ran though!
New people have arrived for their programme, and we meet them better at lunch. They’re all a bit older and quieter than the last two weeks. After lunch I have a Wii Fit session, looking at balance. It’s really hard and I’m crap at most of the games but the Wii does make it more interesting than a balance board. I find standing very painful, but I have a chair next to me so I can keep sitting down.
Later on I have physio. We do a lot more core work, then she decides she wants me to do some walking tolerance. This makes my heart sink, as I’m quite walking intolerant, thank you very much. This is something I’ve explained to her at length. I get a feeling when some doctors/physios see you in a wheelchair, they believe you’re using it all the time. It isn’t the case – I try my best to walk when I can – even just a few steps. If I go over my limit I’m in agony for hours. This limit can differ – some days any walking is too painful, other times I can walk very short distances As part of this walking tolerance she encourages me to walk my limit, sit down, and then walk it again. We go to the gym based at the swimming pool, as the equipment in the physio room is very poor. (It consists of two broken exercise bikes!)
It pretty much looks like this.
We walk back from the gym and I really struggle. My hip goes into spasm and I feel awful. My physio then says cheerily that tomorrow we’ll walk further. I believe this to be badly judged.
Our final session is yet another repeat – Pacing. It’s very brief, but still dull. Yes, yes, we get it. Pace everything, except all those things where it’s impossible. I’m getting a bit negative now with this programme. It really isn’t what I expected.
I am exhausted and go to bed at 9pm, but two people on the other side of the wall to me are talking too loudly for any actual sleep to happen.
I awake and am horrified to find that her arm is still dislocated. I had heard up until the doctor trying, and had then fallen asleep at about 2am. I had no idea she hadn’t been able to get it back in until she told me what had happened.
She’s now on nil by mouth, in case they need to operate to it get it back on. She’s white as a sheet and looks awful.
At 9am we have a relaxation session – really badly timed. It’s in the conservatory which has no heating and of course is nothing but windows. Everyone is tired, and I think everyone just falls asleep in the session out of exhaustion, not relaxation! It’s run by Michele, who I’m not the biggest fan of!
At the end the girl with the dislocation is swaying on her feet, and we take her back to bed before she passes out.
A doctor comes to see her, and says the shoulder physiotherapist wants to try to get her shoulder back in, and would be down soon. If he couldn’t, then they’d move on to other options. She’s upset, she doesn’t want the physios to continue messing about. Luckily her physio is off today, as she doesn’t get along with her, and the one looking after her is much better. They leave her for ages before coming and collecting her to take her to the main physio room, which is a massive room filled with in-patients and out-patients and only a small curtain for privacy. They make her listen to music for an hour to relax her, before Andre, the physio gives it a go.
He manages to get it in, but tells her the technique she was taught would never have got it in, it could only be done by pulling it outwards, then moving her arm across her chest. We’re horrified they spent the night torturing her with a technique that never would have worked, and encourage her to raise a complaint. Unfortunately she won’t.
The girl in the bed opposite was told the day before they’d messed up and while she thought she had another week, there was another space. A nurse then found her in the morning and tells her there is good news – a bed has opened up, as someone who was on a two-week shoulder programme now only needed one. She’s really excited, and the nurse goes to check with the rest of the team.
However, in the afternoon the nurse comes back and tells her they’re sorry, but someone had already filled the slot so there is still no space. Her emotions have been up and down, and we all felt so bad for her.
I say goodbye to her, as well as the girl who’d suffered the dislocations. I will miss them both. Pretty much all my ‘friends’ are leaving except one, who I really like – but her bed is on the other side of the ward so I feel a bit isolated.
But – I’m homeward bound for a weekend of chilling!
I wake up feeling human and I’m not totally shattered, I don’t spend the day collapsing in bed every spare minute I have! Finally!
Stretch first. I get through it a lot better than the last two days, although I still have periods of dizziness and nausea. I can’t understand how I did all three sessions in week one with no issue, then have problems in each session this week.
I then see Lucy, my Occupational Therapist who takes me through to the kitchen to look at different items available. She shows me knives with handles to help support cutting, which are quite good. She explains I need to pick things like cutlery and pens by thick handles. It’s due to the fact my smaller joints are more prone to damage, so I need to put my larger joints to better use and thicker handles help this. She then gives me a catalogue of helpful items to look through, which has some excellent ideas – but I just can’t afford them!
My next session is with Rachel, my Physio and is all about setting my weekend goals. We decide on me practising relaxation at least once, to look at my desk set-up, to look at any kitchen equipment that might help, to do one set of stretches and one set of exercises and to look into getting a gym ball.
We are meant to have Nutrition next, but the lady who does it isn’t there. A nurse takes the session instead and she does it by reading the words on the sparse slides, and then saying she didn’t know the answers to any question asked of her. I’d rather they just cancelled it and put it on when the person was back!
When the girl in the bed opposite me saw her consultant, he put her down for the three week course, but when she got her letter, it said two weeks. When she arrived they said it was an error, but they had no beds, unless someone cancelled. Someone did cancel, so early in week one she was told she was okay for the three weeks. Just before we go into nutrition a nurse walks up to her and says ‘we made a mistake, there is no bed, but oh well, you thought it was two weeks anyway.’ She said it so blasé, and then just left. Unfortunately she’s gutted, and leaves lunch in tears. We try to help, but leave to give her some space.
We have work support next and again, I learn nothing new. I’m getting a bit annoyed with these patronising sessions, that says things like do you know about Access to Work? Yes… Oh right, well I have nothing more to tell you. I just expected so much more.
The questions are dominated by our resident grumpy man, who hasn’t worked for nine years. People that do work and are asking for relevant advice, is rudely interrupted constantly by him. The instructor says nothing, so I interject on her behalf. Honestly, he’s like a child.
Half way through the girl who has just found out she can’t stay leaves, and doesn’t come back. After we find she’s locked herself in the toilet and is retching. Her physio comes to see her, and says she’s shocked, but there is nothing she can do. She says they will try and arrange it so she can comes back in for two weeks in about four months time.
Finally, we go swimming. I find it easier than the week before, and my neck holds up longer. I also do walking backwards and forwards, ‘water cycling’ and some leg exercises.
We have another pizza party with some of the boys from their ward over. We head back to the ward, and a group of us are sitting around my bed when the evening drug round starts. The girl who dislocated her shoulder the week before is standing talking to someone when the drug trolley passed her, and the nurse accidently bumps into her. I saw her react, but she didn’t make a noise. When the nurse has moved on she says she thinks her shoulder is almost out, but when we look we can see the bone is out and it’s a full dislocation. It was as easily done as that. L
She says she needs her strong medication to take straight away, so it can start kicking in ready for the bone to be put back in place.
She isn’t actually on the same progamme as us – we’re all on the rehab or pain management programme. She’s in purely for the shoulder specialists to teach her how to put it back in after dislocations, which she finds very difficult. She had a plan in place, which involves the strong medications, and getting her to get her arm up above her head, and bringing it back down in a specific way.
I go and tell the nurse it’s dislocated and she snaps at me, saying she knows, and there is nothing she can do. She couldn’t have known, having left the room, and there was a lot she could have done. They eventually give her the meds and leave her to it. Her shoulder has been dislocating for five years, and she’s never been able to get it in. She waits and hour and the medications don’t help the pain at all.
Medication Credit: Zomb kille
One of the girls who is new to the programme this week, is also an accident and emergency nurse. She’s horrified they have just left her to it, particularly because the doctors put her shoulder back in the previous week it stretched her Ulnar nerve, which left her unable to move two of her fingers, and was already in a lot of pain. She goes to speak to the nurses and asks them to provide her with some gas and air so an attempt can be made to put it back in. She is told there is no gas and air kept at the hospital – which we know is a load of crap as she had it the week before!
One of the nurses – Mary, comes back into the ward, and someone asks her whether she was aware it was the drug trolley being moved that dislocated it in the first place. Mary turned to her and screamed, “No it wasn’t! The trolley didn’t touch her, it’s never touched anyone! Don’t you dare say that.”
She leaves and comes back a few minutes later. The same girl tries again, and says she thought they should know as she thought as report should be filled in, but the nurse responds rudely and sarcastically.
She leaves the ward and she is overheard saying “Do you know what that they’re saying? That we banged into her! I don’t know why she is moaning because she walked into it herself.”
So suddenly the story had changed to she walked into it. Interesting. There were three witnesses, plus the girl it happened to!
People begin to head to their beds as it’s getting late, and we advise the girl with the dislocation, as horrible as it may sound to give it a go – and if her pain worsens and she begins to get hysterical so be it, perhaps they will take notice. She does try and can’t even move her arm. A doctor suddenly arrives and closes her curtains. We all have to listen for the next few hours as she tries to coach her through doing it herself. She’s screaming in pain, but manages to get her arm up over her head a millimetre at a time, and then can’t bring it down as she was taught. The doctor goes and magics up some gas and air and wheels it next to her bed. She then says she can use it if she wants – but if she does they will discharge her and not be interested in working with her again, as it’s obvious she isn’t interested in trying the plan. I’m so angry – as she has tried. It’s complete and utter blackmail – let’s put pain relief next to someone in agony and tell them they can use it, but with massive strings attached. I hear her respond that they will work with her, because she is trying, and I’m so proud of her as she doesn’t usually stand up for herself. She uses it, and manages to make her arm go the final downwards motion and nothing. Nothing bloody happens. Hours of torture, and the shoulder won’t go in.
The doctor then goes and phones the shoulder team to ask what she should do – whether she should leave it out when she already has nerve damage. No, absolutely not, they say. Get it in.
She comes back and tries three times using the method the physio said she had to use, and it won’t go back in. They then leave for the night with it still dislocated. She doesn’t sleep all night.
Once again it’s not a great day physically. Yes, I know this is a reoccurring theme and it’s dull! I can’t function in the morning though, but drag myself out of bed until one of the girls in the ward tells me I’m mad, and to get back in bed. There is a strict ‘you must attend sessions’ theme, and we’ve all worried all week that if we put a foot wrong they will kick us off, but doing something physical is just completely impossible. A message is sent to the physios running it that I can’t make it, and I fall asleep.
I wake an hour later to the doctor by my bed, checking I’m okay. A bit embarrassing they actually sent a doctor, when this is a quite normal part of the condition.
The sleeping helps, and the next session is relaxation. I’m able to follow it better than the day before and the technique used is called progressive muscle relaxation. You take each muscle in turn from the toe to the head and tense them, then relax them. It’s an interesting taster, but the results would be better at home somewhere in comfort. We’re just on normal chairs – and I tend to need full neck and head support to achieve relaxation.
I then have arts and crafts and continue glass painting. I still find the lady that does it very patronising.
Next up is cognitive therapy, with the theme on stress. No information is given that I would actually find useful on a daily basis. After the session I head back to the ward to sleep again. I wish I could get through a day without this.
Later on I have physio which I enjoy, but straight afterwards we have an hour of sports which is too much at once. My shoulders are in spasm from overworking it in physio, and every sport they have is based on arm movements – table tennis, short tennis, badminton, catch. The physio with us is interested in getting new things, and we suggest more lower limb based exercises (while remaining seated), and possibly something like mini golf which is more of an underarm movement. I play a game of table tennis with a member of the group and it’s much better than the week before! We end with a session of kicking a massive football to each other.
Table tennis Credit: Mishahu
My dad comes to visit me around 5pm, with the idea of going to the friends and family session. I was really pleased they were putting this on, as I hoped they would help explain my condition to him which I have struggled to do. Instead I’m told ten minutes before he arrives “It’s cancelled. Whoops, didn’t anyone tell you?” and so instead we go to the cafe next door for dinner. On the menu they have burger and chips, and that’s it. We order two of them, and are told they only have one. It’s actually worse than the hospital food!
He only stays for about an hour, and I then go straight to bed and am asleep by 8pm. It’s the best night’s sleep I’ve had so far.
I wake up exhausted, and to be honest it ruins my day. I can’t concentrate, and I spend every spare second sleeping. It’s a busy day as well, which doesn’t help. I’m also frustrated as I’ve looked forward to this programme so much – hoping to learn a lot on it, and feel annoyed at myself when I feel I can’t fully take part in it.
The first session as always is stretch. As you remember lots of new people joined yesterday, and we’d all got to know each other the week before and feel comfortable, so there is an air of slight awkwardness. Throughout this session my nausea is playing up, and I take an anti-sickness pill. I tend to find my nausea (common with Ehlers-Danlos Syndrome) gets much worse when my fatigue is particularly bad. The other thing that gets worse is dizziness – so throughout feeling with the mixture of dizziness, fatigue and nausea – the session isn’t particularly fun and I have to keep taking breaks.
One of the new ladies unfortunately has an even worse time. She suddenly whispered to me she didn’t feel well and was going to get some air. She almost reaches the door when she collapses. The physios rush around her, covering her up and putting screens around her. We’re told to carry on, and when we finish the session she’s still on the floor. We see her a bit later and she says she just got incredibly dizzy and ill. I feel really bad for her.
Straight afterwards I have my first gardening session with Viv. It’s all adapted, with long handled tools, which is really awesome. It’s set out so you can sit at a table to work, and I re-potted lots of Snapdragons. I then watered them with a can you didn’t need to tip, just press the button – which is fantastic for those of us with wrist, arm or shoulder issues (or all!). The underlying emphasis of the session was about posture and pacing, so I had to regularly change position and stand, or walk every 10 minutes. She helped put my posture right, but was nice about it. I come out feeling positive and like I can get this posture thing down. (I struggle as I hold my body in certain ways due to the pain, so while it sounds easy, it isn’t always.) I also really enjoy the gardening aspects and find it soothing.
My next session is Intro to Relaxation and the tiredness just hits me. She says it’s just the theory behind it, and I think thank god, as I’d just fall asleep. The room is cold, uncomfortable and packed, so how we’d relax, I don’t know. She goes on about the benefits of it, and my eyes keep shutting. A couple of times I find myself jumping awake. I just need it to be over so I can lay down, but on it goes. Then she announces we will have a short try by closing our eyes and breathing deeply. I keep my eyes open, trying to read or do anything to stay awake, digging my fingernails into my arm! It was horrible. I hate that feeling when you just can’t fight it, but it’s not somewhere you can sleep!
Lunch is next, but I collapse into bed to sleep, and then eat my salad on my bedside table as I just can’t move. It’s quite all-consuming today. Next I have physio, and I was looking forward to playing on the Wii, but someone else’s physio had the same idea – and decided to use it for the hour, rather than share it. Instead I work on the shoulder strength and core work. She asks me if I feel whether we’re missing anything out. It’s want to say that I feel it would be nice if it was more hands on, trying to relax some of the muscles as well as just exercises, but I don’t feel comfortable enough to do that. I tell her my wrists are very sore, and she gets me to try on a wrist support, but it’s no good unfortunately.
Straight after I have Occupational Therapy with Lucy, who coincidentally enough has decided to look at my wrists and hands. She tests my grip with a machine and says it’s very weak, particularly on the right. We try on lots of supports, and pick one with wrist and hand support to order in which feels really comfortable and gives support without being too tight, and another which is like a tight glove. People with EDS often have trouble with their joints as their brain can’t quite tell where their joints are (called proprioception). After putting it on immediately my grip improves. It’s a ugly thing though! She is also going to look for something to help my elbows which keep locking in hyper-extension, particularly overnight, which is very painful. Finally, she is going to write to my employer to say I need a phased return.
Next up is Arts and Crafts and I’m not so keen – which is ironic as I love crafting. Again, they look a posture – which I’ve kind of had enough of today. Every time I move she makes me move back into the ‘right’ position, even when it’s painful. She goes to ridiculous and patronising extremes, and hasn’t a clue about pain and how it impacts on your posture. I come away wanting to sit slumped for the rest of my life just to spite her, rather than earlier that day with Viv when I felt inspired. A terrible way to go about it.
Finally, a break! Once again I collapse in bed. I hate these day-time sleeps, as I’m trying to get better sleep at night, but it’s impossible not to. I’m just leaving for my final session when one of the ladies in the ward faints. God, it’s the day for it! I’ve never seen the nurses move so fast. If you’re wondering why so many are fainting or dizzy – we all have a condition called Postural Orthostatic Tachycardia Syndrome, which is linked to Ehlers-Danlos Syndrome. It causes your blood pressure to rise as you stand, causing dizziness and sometimes fainting.
The final session is on Pain – why it happens, what it is, etc. Again, I would be interested normally, but I’m fighting to stay awake. It wasn’t a session I was originally down for, it was just for the Pain Management patients, not the Rehab, but my physio said she thought I’d be interested. They finish the talk, and the two patients point out they’d heard exactly the same talk the week before. They’re told they do the same talk each week, and they have to listen to it three times. How weird! I won’t be going next week anyway.
Tea isn’t great. Afterwards a few people have to walk to the nearest shop as they were still starving.
I set my jewellery out in the evening and make a couple of sales. I also start work on a bracelet commission. Just as we’re settling down, the grasshopper (or cricket or whatever) reappears again. Someone manages to grab it and saves another sleepless night. Yay!