Thursday, 28 January 2021

Flare up - Occipital Neuralgia

I had been having a good couple of weeks at the start of this year, of course I had my usual problems but there was nothing that would test me as far as pain was concerned. I had brief episodes of bowel adhesion pain, the odd migraine but nothing that laid me low for days at a time, until now. Over the last few days I have had a flare up of occipital neuralgia that has come out of nowhere and no pain relief that I take touches it.

Back in December just before Christmas I had a MRI scan done to look at my neck to see if there was anything "bony" causing my pins and needles in my arm / hand / fingers ( yes this is still an issue after the car accident in August) . They were also supposed to be looking at the occipital nerves to see if they were inflamed. I got the report back last week that said as there was nothing structurally wrong, orthopaedics would be discharging me, with an open referral back should I need it. Their advice that these things would take time to settle down due to the fact I have EDS and  we were looking at years rather than months. Which is a bit different from the private doctor I had a video call from in September that without examining me or knowing my medical history reported to my solicitor that I would be back cooking and shopping within 5 months. It is shame he made such a tit of himself seeing though I haven't done those things since 2008! He didn't even know that I use a mobility scooter or a wheelchair and claimed I left the car unaided at the scene of the accident. Making it up as you go along springs to mind, considering I never left the car at the accident scene and I haven't walked unaided since 2008. I don't know what is more shocking the fact that this guy works for my insurance company or that he could file a report with over 30 errors in and despite me telling the solicitor this, providing a correction for him, I heard nothing. But I digress.

The magical 5 months when I will return to my normal activities pain free is up on 19th February. After the last three days I really can't see it happening. As I type my left arm is going numb. I have pins and needles in my hand. The occipital nerves on the back of my scalp feel like they have been set on fire and put out with a shovel. Yet apparently this will all miraculously disappear the stroke of midnight on 19th. Excuse my cynicism, when this crap has been spouted by a doctor that spent the sum total of less than 9 minutes on a video call with me.

When the occipital neuralgia is bad I can't sleep because the back of my head / neck touching the pillow is agony. The other night I was so uncomfortable that I ended up sleeping without any pillows because my neck hurts so badly, even with the variety of neck pillows and normal pillows ( I have 6 pillows on my bed) at my disposal. I always know when it is going to be bad as in the evening when I am watching tv in bed, the back of my head starts to ache where it is in contact with the pillows. Sometimes I can prevent the situation getting worse by immediately lying down and going to sleep. However that only works 50% of the time and many times I am in the situation I found myself in on Monday night with ever escalating pain and nothing that I would normally do preventing it from getting any worse. 

During the day during a flare up I am left with a stiff neck, a feeling of constant pressure on the base of my skull, that travels up over the back of my head. I get zaps of electric shock type pain into the back of my ears. The pain will also travel over the top of my head, go into my eyes and forehead. When it gets this bad it will trigger a migraine. I am left wanting to repeatedly bash my head against something in the hope it will do something to stop the pain. When it gets to this stage it is exhausting because a) I am not sleeping and b) pain just wipes me out. It makes my mood very low which I hate because sitting around feeling sorry for myself is not something I do. I chose a long time ago that I wasn't going to sit and cry every day wailing why me? Because basically why not me? Plus crying everyday would be a waste of the life I have, having lost friends along the way, I don't want to waste time wallowing. I want to spend my life doing the things I enjoy, spending it with people who are dear to me.

Don't get me wrong there are days when I get fed up with it all, days where I wish this wasn't my life. I limit myself to a maximum of 24 hours like this and then I have to snap out of it. The most I ever moan about my condition is in the pages of this blog. I use this as a place to express myself, people can chose to read it or scroll on by. I sometimes equate my blog as shouting (sometimes screaming) into the void. It is somewhere I can get something off my chest and then move on. By the time people read this, I am usually in a better place and ready to face the next challenge.

A lot of the times  writing the blog post is enough to make me feel better about something. It is deeply cathartic. I have also started keeping a diary this year for the same reason. Sometimes it is nice just to feel like you have voiced your fears / concerns / hopes / dreams. You don't necessarily need someone to listen to them to validate your feelings you just need to get them out of your head.

I am hoping that this flare up will soon subside and I can get back to "normal".


Thursday, 21 January 2021


Everyone always says that January is a long month and up until this year I would have agreed with you. For me January is whizzing by at a rate of knots and I don't "get" why. Nothing in my life is any different than normal and I am not the only one who has said January seems to be rushing past in a blur.

January is a hard month for me emotionally, it contains far too many anniversaries of people whom have passed away, ( and obviously Frankie and Mollie's passing) lives cut short when they should have had so many more years ahead of them. It is always a battle for me to keep myself from sliding into depression, with its dark mornings and gloomy days. It would be very easy for me to go to bed and just not get out during January. Especially with what is going on in the world currently.

I shall just state for the record this isn't a "new year, new me " shite post. I don't do new years resolutions purely for the fact that January also contains the anniversary of me finally getting the diagnosis of PoTS in 2011 after my first tilt table test. I also first became sick on 5th January 2007. So I don't hold with the New Year superstitions of not cleaning or doing washing on New Years Day in fear of removing all the good luck from the house. January has always been a shitty month for both of us regardless of what we did or didn't do.

For some strange reason I have found this January easier to bear, despite the fact my friends and dogs have been on my mind a lot. I still have days where my mood takes a sudden dip or I wake up and have no energy at all despite sleeping well. I seem to be in a better place mentally this year than I have in a long time. Believe me I am not all sunshine and unicorns but I don't feel that ache in my heart and lack of motivation to do anything at all.

I did make two changes at the start of the year, one was to improve my fitness and the other was to drink less alcohol. I had been drinking a lot more than I ever usually do during 2020, like a lot of people. I never got falling down drunk or anything like that but I noticed how much gin I was getting through, where once upon a time a litre bottle would last me 6 months or more, now it was lasting weeks. I was having probably a maximum of three gins in an evening but they are at home measures rather than pub measures. It was becoming something I needed rather than an occasional tipple. I am not saying that I had a problem or that I am an alcoholic. I just didnt like the way I was feeling the following day, I was feeling nauseous quite a bit first thing in the morning and ( I've always had this weird reaction to alcohol ) I was getting a lot of vertigo after drinking the night before. This meant I was spending a lot of time feeling a lot worse than I would normally. It seemed a bit silly that something I  didn't have to have was now impacting my health so much. 

After seeing someone else on Facebook had signed up to Dry January and was using the app to track their progress I did the exact same thing. I haven't had a drink since 31st December. The first day was hard, it got to 5pm and I wanted a drink. It had become a habit and as we all know habits can be hard to break. For the first three days the bottle of white wine that was in the fridge was calling my name every time I opened the fridge door. I ignored it's siren call and have now completed 20 days without alcohol. 

At first I was so completely sure I couldn't do 24 hours without alcohol that my first goal was to get through the 1st of January without a drink. My second goal was 3 days, my third goal was 10 days. Only now have I signed up to Dry January as I do feel like I can do the 31 days straight without alcohol. There have been moments where I have almost given in to temptation but I haven't cracked so far. I'm proud of myself getting this far, I don't think in the whole of 2020 I went this long without alcohol. I am sure my liver is thanking me. I have also noticed that I am not needing my B12 injections so frequently since cutting out the booze. My left leg had started getting pins and needles in it every four or five days. That is my sign that I need B12, as soon as the alcohol stopped my need for B12 so frequently stopped. 

I have noticed a couple of other changes with cutting out the gin, I am sleeping better and waking up ( most of the time ) feeling clearer headed. This morning I woke up and was so convinced it had been Sunday yesterday and today was Monday that I took Monday's meds instead of Wednesday. But I will blame that on last nights migraine. Today I am feeling fuzzy headed and I know that is just the aftermath of the migraine. I am also fully aware that today is Wednesday and not Monday like I first thought ha ha ha! Also the vertigo that I was experiencing almost daily has reduced enormously, to a couple of times a week. I have it bad this morning as I always do post migraine.

I'm not giving up alcohol, me and alcohol are just having a break for a bit. I have bargained with myself and said I can have a tipple at Easter.

My other goal was to improve my fitness as I was noticing that I was less and less able to do stuff. It was making me feel old before my time. Obviously due to mobility issues I am never going to be a marathon runner or take up disco dancing but I needed to start doing my pilates exercises more as I was having a lot of pain from my  spondylolisthesis where the vertebrae were slipping further forward. Causing me shooting pains down both legs and making it very difficult to do even the simplest of tasks. 

I had read an article about how exercise can make your immune system function better. It is always a worry that if I contracted  Covid that I would get seriously ill . Not through any of my pre-existing conditions, just my bloody luck. Something in the newspaper article worried me as it said high neutrophils ( which my blood tests always tend to show ) means the immune system is out of balance and could make it harder for you to fight off Covid.  I have high neutrophils probably because of the inflammation in my body from arthritis affecting so many joints. Until I read that article it wasn't something I had ever been overly concerned about. I knew losing weight would take time but exercise would have a quicker result. 

So now I try to exercise every day, either through doing core strengthening floor exercises (usually done on my bed so I don't get stuck on the floor) I have added in some very light resistance bands to my pilates exercises as it helps stabilise my hip joints and stops me rushing the exercises. I have also started using a recumbent bike to exercise and strengthen my legs. Again my hope in strengthening my legs is to help my back as it will also help build up my glutes which again will protect my back. It is hard work exercising after so many years of not doing anything. I also really noticed how much worse my back had got without regular physio (due to lockdown's) and without me sticking to my Pliates exercises consistently. 

It was time for me to make a commitment to helping myself a bit because there are things I can do to lessen the pain I am in.

Thursday, 14 January 2021

Lockdown 3.0 / Happy New Year

 I had hoped Covid-19 would be less of a thing in 2021, I knew that it would be months before we started seeing light at the end of the tunnel but thanks to the British governments catastrophic handling of the situation, things are worse than ever. Deaths are at over 1,000 a day on our small island and people are taking lockdown 3.0 less seriously than they did in March 2020. Just WTAF?

It is hard when you are home alone all day not to fall down the Covid-19 rabbit hole. I can't lie I do worry about it. Especially with the situation where London hospitals have called a major incident for days in a row now, meaning they are overwhelmed by the number of Covid patients needing treatment. They are now having to ration the care they give and assessing what "value" your life has to society. Over 70 years old with a bad case of Covid the chances of you getting off a ventilator after being intubated are slim to none. It won't be offered to you, instead you will be made comfortable and be under the Palliative care team. More than likely you won't even get to see the back of an ambulance, soon you will be "allowed" the dignity of dying at home, not remotely comfortable because there aren't the district nurses to cope with the sudden influx of patients.

And yet the Covidiots shout "It's only the Flu!" "It only kills the old and infirm". That's all well and good until you realise that you are in that category. There are actually very few people without underlying health conditions. So many people have asthma, are overweight or have autoimmune conditions that mean that they could find it harder to fight off Covid-19. I find it very upsetting when people start spouting that shit because I have a lot of underlying health conditions. I know my "value" probably wouldn't be high enough. I wonder should my life be sacrificed so you can live your's unimpeded?

I have managed to stop myself being caught like a rabbit in the headlights, watching 24 hour news channels all day every day like I did back in March 2020. I restrict myself to only watching the news in the evenings. That way for the large proportion of my day I can pretend that it is just a normal pre-covid day. Because in reality my life has changed very little with lockdown, other than I can't have the fortnightly get together's of The Stichin' Bitches, the little craft group I had set up in the weeks before the everything went to hell in a hand basket. Sadly I had just found something that gave me immense joy and it was snatched away. But it will still be there when or should I say if things get back to normal.

Routine I have found is very important, in the 13 years since I have worked. Without a routine it is very easy to slip into depressive thought patterns and feel like life has no meaning at all. By having routine, it is like having mini goals for what I want to achieve for the day. Some days I achieve everything I want and more, other days I barely move from my bed but that is ok too. Although I still need to work on feeling guilty for not using my days more productively when I need to rest or heal. I still hold my self worth to how productive I have been, our whole society is built around being a productive member of it. If you don't work you can feel that you no longer have any value. That there is nothing that you can offer society. That is a tough way of thinking to escape. I like to think I offer more than a monetary value to society, I make beautiful things, I make practical things. I am enough.

Over the last 5 months music has become very important to me. It started with listening to the radio ( I love Absolute 80's ) . It coincides with when I started taking HRT, within days of starting the low mood I had been experiencing for at least 3 years had lifted. In all that time I had only listened to music very sporadically. Now I have it on every day. I really enjoy singing along with the radio as I go about my day. I like the 80's music as I remember so much of it from growing up. I know some 90's music but I was at an age where you (can) stop listening to new bands and get very stuck in the music you like. 

I've always been a bit of a Pop Princess as I like to call it. I like all genres of music but Pop is the one I will always go to if I need a lift or need some energy. Just before Christmas as part of Jays Christmas present as he was desperate to see The Mandalorian I subscribed to Disney+. Flicking through its offerings, I saw they had the Taylor Swift Folklore The Long Pond Sessions. Now I will be honest all I had heard of Taylor Swift musically up until then was "Shake it off" and "Look what you made me do", which were ok. All I had seen in the press were negative articles about her and her love life. I didn't hold an opinion one way or another. I had  seen on Netflix that they had the Taylor Swift Documentary on it. So I thought why not, if I didn't like it I could turn it off. How wrong I was.

I actually liked Taylor Swift the person, well what she presented on the Netflix documentary. So the following night I decided to watch the Disney+ one about her album Folklore. Well I fell in love. I have been chatting to my friends about it and laughing because I am like a teenager again obsessed with this album. I play it multiple times a day and never get bored. From morning to night my internal sound track is playing it in my head. The whole album has been like a giant ear worm but one that is thoroughly enjoyable. I have watched the Disney+ documentary so many times now, poor Dembe must be totally bored by it now as that is all he hears.

Finding my way back into enjoying music again has been the combined result of having HRT and the lockdown. Without either of those it wouldn't have happened. It has been like a journey of discovery for me. A bit like when you are a teenager listening to new bands and deciding which ones you like. It has been very uplifting in a time when it would have been very easy to be overwhelmed by the news / Covid-19 / Lockdown 3.0. I have been lucky enough to be able to inadvertently get back to something I love which is music. I do believe time in lockdown can be used positively rather than sitting around doing nothing but watching the news. I know not everyone will love my taste in music and that is ok, find what you love and use it to lift you up.

It would be disingenuous of me if I said every day in the last 12 months have been filled with roses and unicorns, of course it hasn't. I got very down after the car accident as it massively impacted my ability to sew / embroider / crochet. I allowed myself to have those down days because denying it would have stored up trouble for the future. It is important to acknowledge those feelings, they are real and they are valid. The trick is to move on after 24 hours and pull yourself out of those negative thought patterns so that they don't become all consuming. It is hard at times especially when I have had to go to bed early yet again due to the crippling headache I am suffering with due to the neck injury and the muscles spasming. I still have issues every day with numbness and pins / needles in my left arm and headaches of varying ferocity. It could be a while before that goes if it ever does. So you have to just get on with it because life will still carry on around you.

I've rambled on much more than I thought I would! I am back after my Christmas and New Year break. I want to wish you a Happy New Year! Thank you for reading.

I have left you the YouTube link to Taylor Swift's Folklore Album, listen, don't listen. Just find what brings you joy and stay safe.