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.

HRT

Good god I feel old, as of last Thursday night, I started HRT ( Hormone replacement therapy). I was put on it for a number of reasons but the main one was an attempt to get a handle on my migraines that have just spiralled out of control since March this year. Leaving me some weeks having 3 a week. I was feeling permanently exhausted by it all, some of it was the migraine hangover and the rest was the Sumatriptan that although stops the migraine in its tracks leaves me feeling drowsy for the next 24 hours.

I’m not the youngest person to be put on HRT, I know people who have been placed on it since their 30’s due to premature menopause or surgical menopause ( post hysterectomy ) but I am a good 5 years below the national average of the onset of menopause which is 51 in the UK. So whilst I am 46 and amongst the first in my friendship groups to be placed on it, it is making me having to deal with the fact that the first flush of youth is well and truly over. Middle age is upon me and it is making me feel sad. 

The sadness has nothing to do with my fertility being over, that isn’t something that has bothered me. Although I can understand why some women would be upset by this especially those who have entered menopause early before they had the opportunity to have children. I am lucky I don’t feel robbed by it, just relief as my periods were just so painful they would dominate 14 days out of the month. I would get cramps up to 7 days before my period began along with tremendous amounts of water retention, I would have period pain for the whole time I bled and it would be at the same intense level throughout. The pains when I had them were so strong I could time the contractions of my womb ( one of the many reasons why I don’t have children as if periods hurt that much the pain of having a child would kill me, no word of exaggeration). Having periods made me feel like a prisoner in my own body. I had asked repeated doctors to let me have a hysterectomy, all they would ever say was no because I hadn’t had children yet. The best thing that ever happened to me was being put on the contraceptive pill cerazette which stopped my periods completely. I was no longer dictated to by my monthly cycle.

Since 2016 I have endured ever increasing peri-menopausal / menopausal symptoms. I started sweating really heavily at the slightest physical exertion after not really being a sweaty person. I noticed my natural body odour change as well and became paranoid that I smelled, despite Mr Myasthenia Kid and countless friends telling me it wasn’t the case. Then out of no where I was hit with crippling anxiety. I have always been an anxious person but this was off the charts, like nothing I could fully explain. I felt like there was a tight ball of barbed wire in my chest and I carried it with me everywhere. I had a constant feeling of my heart skipping a beat in fear. Due to the level of bereavements we went through in a short period of time I put the ever increasing anxiety levels down to a response to the grief. My life felt like it was spiralling out of control. It wasn’t uncommon for me to wake up at 1-2am in a full blown panic attack with absolutely no idea what I was panicking about. 

I would find myself in a cycle of  very unhealthy catastrophising thought patterns. I never looked for the silver lining only the absolute worse case scenario. I spent the first year of Dembe’s life worrying constantly that he would die. There was no indication that this was going to happen, it was just a constant thought in my mind. I worried about him constantly. The worst thing was I couldn’t share my fear because I was concerned that people would think I was deliberately trying to harm him or that I was just plain weird. It was a very lonely place to be and I feel like I missed out so much of that first year due to this irrational fear. I put my fear down to Travis, our first dog becoming sick at 6 months old and passing away just before his 3rd birthday. I also reasoned out losing Frankie and Mollie in quick succession had just made me hyper-vigilant and that it would pass. I would find myself waking up in the middle of the night just to check he was still breathing.

Carrying that level of anxiety day in, day out is exhausting. Especially when it is yours alone to bear.  That is why I can’t get over the fact that with just a few doses of HRT (4 so far, I am writing this on Monday morning) that ball of barbed wire in my chest has gone. I have lost that feeling of everything being out of my control. My anxiety hasn’t gone completely, I think I will always have some level of anxiety as that is who I am . I would be anxious if I didn’t have anxiety! I am feeling much more relaxed and even Mr Myasthenia Kid has said there is a glow about me, something he hasn’t seen for a very long time. He said the look of worry has gone from my face and I am back to being like the old me.

HRT hasn’t been without side effects, had I known that one of them would be rampant diarrhoea – and I mean the time when it sounds like you have taken a piss out of your ass ( sorry if that is TMI but really I have been writing this blog for 12 years if you are only just offended where have you been?)I would not have started it on Thursday night when I was going to be travelling with Jay and Dembe to look at cars, with at least two 90 minute journeys. Thankfully I woke up at 5am so I could take many doses of imodium ( 8 tablets I ended up taking that day) to stop everything I had eaten form 1973 on-wards pouring out of me. Thankfully after the first day this side effect stopped. I had reached out on social media and asked if anyone else had suffered this side effect and a few people had. I also googled it and found that I wasn’t alone with this symptom. Thankfully it did settle down after Friday and I have been fine since.

After the first dose I immediately felt different – well the next morning. Normally Fridays trip out to buy a car would have had me awake all night and feeling anxious and I felt none of those things. I felt reasonably relaxed and happy. Again another feeling I hadn’t felt in a while, happiness. Whilst I hadn’t been depressed, it was more like a feeling of being low / blue every day, I just felt more in the moment instead of caught up in my head . I even found myself singing which is something I haven’t done a lot of for many years. For a couple of years I have felt like an imposter going through the motions of my life, now I feel like it is me. I am not having to pretend I am happy or that inside that I am not a simmering pot of anxiety and rage. Rage has been another symptom I have suffered from. I could and would just explode over the smallest of things.

I am still crying at the drop of a hat which winds me up no end. I only have to watch a slightly sentimental advert and the tears are rolling down my face. I have got into the Canadian series Heartland ( about a horse whisperer, her family and a horse ranch). I watch it most nights before i go to sleep as it is on Netflix and there are 13 seasons. I haven’t watched an episode yet without crying at something. I seem to be lasting longer before the tears start, I am hoping that as my body gets used to the HRT * which could take up to 12 weeks, these tears will stop.

I am yet to know if the HRT will make any difference to my migraines, I woke up with one on Friday for the first time in ages. Normally I have been having them start in the afternoon with a classic aura. It could take up to 12 weeks for it to reduce  / stop my migraines. It could also not do anything at all, which means I may have to try different types of HRT to find the optimal one. I really am keeping everything crossed that at the very least my migraines are reduced if not stopped as the last 5 months have been very tough with so many days lost to them.

The hot flushes I was having have also reduced in severity since starting HRT 4 days ago. My hot flushes tend to go in cycles, sometimes they are awful every 20 minutes all day every day to the point my clothes are soaked through and I have to go and change. Filled with the paranoia that I am stinking of B.O due to the level of sweating. It got to the point this summer that I gave up drying my hair. There was just no point as the heat from the hairdryer and straightening irons would have me sweat so profusely that I would have to wait an hour to cool down before I could get dressed. I couldn’t apply make up ( on the rare occasions I wore it) as it would just be sliding off my face due to the sweat running down in. When the flushes were at there worst it would leave me feeling dirty and down because I had no control over what was happening to my body despite using supplements such as red clover, sage, black cohosh, royal jelly etc.

This severe sweating cycle would then out of the blue just stop sometimes after months, sometimes after weeks. I would be able to dry my hair and only have to dab my face a few times. I would have possibly two flushes a day and the menopause would be back to feeling manageable. It was the never knowing day to day what the menopause would bring that would leave me feeling stressed.

4 days into HRT and the sweating / hot flushes are reducing massively. I haven’t had to change my t shirt 15 minutes after first putting it on because I had armpit rings – something I have never suffered with even when I was well and would go to the gym. If it stops these or just reduces the hot flushes to the point where a tissue will dab the beads of sweat off my face I can live with that after the summer I have just been through.

Just 4 doses in and I can understand why some women say that HRT is a miracle drug and has given them their lives back. Until I started 4 days ago I really didn’t realise how much of my life had been lost to the menopause over the last few years.

Oh and we did get a car on Friday and the plan is that we will pick it up tomorrow ( Tuesday 25th August 2020).