Turd Cake

I will be honest very little about my health gets me down. Well not strictly true, the migraine situation ( up to three a week) was pretty trying but thankfully that has settled, plus when I have a CSF leak flare up of symptoms but that is more of a freak out along the lines of what if it doesn’t heal and I have to spend the rest of my life in bed ? I don’t know if I can do it. The injuries from the road traffic incident are really messing with my mood at the moment and I feel a bit of a flake due to it. I put up with a lot of shit that seems to be continually thrown my way but I am struggling to deal with the constant pins and needles in my left arm / hand along with the burning pain that comes with it. Topped off with a numb left buttock which is the icing on top of the turd cake, I am struggling.

I spent last week feeling really tearful, the physiotherapy session from the week before had done nothing but make everything hurt more. Six weeks after the accident and instead of things improving things are getting worse. The pain is like electric shocks, you never know what movement will prompt the sharp zing of pain radiating either from my neck or my upper back. My left shoulder is grating in the socket. I have had enough, it is as simple as that. The only time I am free from the pins/ needles / burning / numbness is when I am asleep and even then I am being frequently woken up by the pain in my neck. And just when you think things couldn’t get worse they do.

On Saturday I had a video call with a private Doctor for an assessment of my injuries following the car accident back in August. I had all my notes written out, a list of my prescription medication printed out, I was all prepared for the “meeting” which I was anticipating to last around 30 mins to an hour. So you can imagine my frustration when I was rushed off the phone in 8 minutes and 22 seconds. I was told that my injuries would take months to heal and that he would organise 8 sessions of physio therapy. Basically as soon as he found out I didn’t work, it didn’t matter how my injuries were impacting me. I was sat dumbfounded in shock afterwards trying to work out what had just happened. Every time I went to speak I was talked over. He was completely clueless about EDS, so when I say my range of motion is reduced, it doesn’t look like it as it has just reduced to a non EDS persons range of motion. You need the input of someone who knows me and has been treating me for years. Yet my whole case could be settled on the basis of this arsehole doctor. I cried. I cried because I felt like I hadn’t been heard, I cried because I felt like I hadn’t been believed and I cried because yet again I was going to have to fight another battle for a situation that hadn’t been caused by me but some stupid twat driving a BT open reach Van and him not paying due care and attention.

I was shocked at how low I was and how easily the tears came. I am not one that dissolves into tears over stuff that is to do with me. I will cry at tv shows etc but I am not one to sit and sob about my life. I made that decision a long time ago and felt that it would be a waste of time and energy. But Saturday I just didn’t care. It was just another punch in the gut.

I’m afraid to say I just wallowed a bit Saturday morning. I wrote a very strongly worded email to my solicitor pointing out all the issues i had with my 8 minute and 22 second health appraisal. I really wouldn’t mind but that doctor will be being payed hundreds to churn out these assessments over video calls and it appears there is no quality control at all with them. I then was angry, angry that as soon as he realised I was disabled and not part of the work force that my life was some how worth less than other peoples. WTAF??? 

So after Jay had popped home for lunch and I had a bit of a vent to him I decided that I needed to push myself and do something on my embroidery machine. I hadn’t touched it all week as I had been feeling like everything I do is shit, I couldn’t concentrate and sitting at the machine isn’t very comfortable even with extra pain meds, special cushions and hot water bottles. I set myself the target of completing one piece. Within 15 minutes I was feeling much more relaxed and was actually enjoying what I was doing. I ensured I had lots of breaks and pottered about on the long stitch outs. I actually managed to get two blocks done and it was such a mental boost for me. It really cheered me up after spending the last 4 days on the sofa feeling sorry for myself. 

By sitting at the embroidery machine and forcing myself ( it felt like pulling teeth initially) to be creative, I proved to myself that I was good at something and that my life even with this constant nerve pain, was worth something despite the way the doctor had made me feel earlier on that day. I was in pain when I finished, it wasn’t easy but I did feel like I had accomplished something. Something other than wasting the afternoon feeling sorry for myself. 


For me being able to be creative is better than any drug, it lifts my heart and fills me with joy. It makes me feel good about myself. So on Sunday I spent some more time at my embroidery machine not because I was forcing myself to but for the first time in ages I wanted to.

These are for some gifts that I am making. Hence why I have started Christmas projects now as everything is taking me such a long time to do as it has to be done at a much slower pace than normal. I have even managed to get some blocks of my spells and potions quilt for Halloween started.

I am lucky that I am a) able to do these pursuits and b) can afford do them. I count my blessings every day but that doesn’t mean that everything is wonderful in my life. It just means I have a distraction from the constant nerve pain. Nerve pain which is the icing on the Turd Cake I am currently dealing with.

Health Update

After last weeks post Spondylolisthesis my back improved massively. Just yesterday I was considering dropping taking the naproxen as it hadn’t caused me any issues at all for a number of days, then I woke up this morning and bang the pain was back.

I have pushed through as much as I can today but I had to give up at 14.30 and take some diazepam. The muscles of my backside are really tight and sore. When they are like this it is a symptom of the Spondylolisthesis, it aches down the back of both my thighs and no position is comfortable. Standing feels like someone is kicking me in the arse, sitting makes my buttocks ache and I get severe pain in my coccyx. If I could lie down knowing that by doing so I wouldn’t be woken up at 2am by my back throwing a tantrum I would. So at the moment my only relief is by having a hot water bottle applied to my back ( far too hot ) and regular changes in position which makes doing anything difficult because those changes need to be made every ten minutes or so.

If I knew why my back had kicked off so much today I would be happier, I didn’t use my sewing or embroidery machines at all yesterday. We had a relatively lazy day but even in that we were moving around and I certainly wasn’t static for hours at a time. Which I know does cause me issues, so I am at a loss. I have avoided all the things I am supposed to like lifting – can’t do that anyway, staying static for too long. All I can think is that I have turned weirdly in my sleep and hyper-extended my spine and it is letting me know today that it didn’t like it.

I have always found wherever possible distraction is the best possible thing to combat pain but some pain is just so strong that no amount of distraction can stop those nerve signals being acknowledged by your brain. That is why I like sewing / embroidery / crochet as it means I can distract myself most of the time but today it hasn’t mattered what I have done those pain signals are just getting stronger and stronger. I am very glad that we now have a dog walker who takes Dembe out for an hour when Jay is on a late night as it means Dembe settles very quickly in the evening and I will be able to go to bed and attempt to get comfortable relatively early on tonight. Rather than Dembe needing mental stimulation for 90 minutes or so, to tire him out and get him to wind down for the day. 

Much of the last few days has also been spent on high alert as from now until the 23rd (ish) I am on migraine watch. This week of the month is usually when it strikes. Yesterday ( Tuesday) I was convinced it was going to be today as I was starving hungry all day with nothing satisfying me. I am still trying to work out what the signals are that I am going to end up having a migraine but there is nothing I can say is 100% concrete that is a definite clue that it is going to happen. I have noticed mood changes the day before, hunger and sometimes the evening before my vision goes a bit weird. However it doesn’t happen on each one, which means sometimes these things happen, I get frightened because they have been so bad and then nothing. Which is exactly what happened last night. 

I am a few weeks into the Migraine Clinic protocol and they advise that you really need to have been doing it for around 3 months before you can say if it has had any effect on your migraines. You can find the protocol HERE. So it is too early to say at the moment, also I have been known to skip a months migraine and have it two weeks later so a cycle of 6 weeks rather than 4 weekly. That is the major issue I won’t know when the next one is coming. I have worked out that dehydration is a trigger but it is a rare trigger as due to my excessive thirst I do tend to drink much more than the average person. The day in question when I did suffer a migraine it followed a day where I had been drinking alcohol from around 2pm in the afternoon (Cider at 4% so not the hard stuff). Because I didn’t have any additional fluids I am pretty sure that is what triggered that one and I had to use my emergency meds. I was very grateful that I did have my grab bag made and everything in one place as it meant I could take the meds and get my head down.

I have been religiously taking my supplements and even managing to remember to take the midday dose of the one I have to take three times a day. A new alarm on my phone helps me remember!

As sitting is literally a massive pain in the butt and I am having to type this sitting down I am going to wrap this up now. Plus I took half a diazepam about an hour ago and that starts messing with concentration levels. Plus I want to tidy up a bit before Dembe gets back from his yomp on the common!