Happier than I have ever been

 A few times of late I have thought about updating the blog and then something happens and I forget. It is never deliberate, I certainly never anticipated such a long break and I can't promise that I will be updating on a regular basis either. So much has happened in the last 18 months I sometimes have to stand still and take stock because life is certainly not what I expected it to be back in 2020.

So for those of you who don't know me outside of cyberspace, we have moved house. After 26 years living in Exmouth in East Devon, we have moved to a small town just outside of the Dartmoor National Park. From my bedroom window I can see the Western Beacon, which is where both Mr Myasthenia Kids ashes have been scattered. We now have a huge garden, I have taken to growing plants, me the person who was always known as the black hand of death where plants were concerned.

We are surrounded by trees out of the lounge window there are trees, out of the kitchen / dinning room there are trees. I have never felt so completely grounded in my life. My mental health has also never been so good. The wait of others expectations and being guilt tripped for not dancing to others' tunes has gone. Dealing with having to see people I didn't want to see on a near weekly basis in the summer has gone. The threat of people turning up at my house unannounced has gone. I am no longer forced to act as the parent, to my family. Unless you have lived through that situation you could never comprehend how much that mentally drains you. The stress that I have borne for every single day of my life has fucked off and I have never felt happier.

My days are filled from the minute I get up to the minute I go to bed. Moving to a much larger abode has taken its toll on me physically but as we have been here nearly 11 weeks now I have slowly become accustomed to it. Dembe and I are out in the garden whenever the weather is dry. Dembe has got a new dog walker that takes him out for 30 minutes when his dad is working late - Mr Myasthenia KId has managed to keep the same job just transfer stores. He is working over the other side of town so I no longer see him at lunch time as he just wouldn't have enough time to travel there and back but Dembe and I are managing. Dembe has never been so happy, he loves his garden and he loves the fact his mum and dad are happier here.

We have managed to set up a hedgehog feeding station in the garden and one of Mr Myasthenia Kids leaving gifts from his workplace was a night vision wildlife camera. Watching the hedgehogs on the camera has been amazing. We know we have at least 4 visiting and we have a courting couple.

We have so many plans for the house and the garden, plus we would like to have a holiday. The last time Jay and I went away anywhere was 2006. The last time we had a proper holiday was in 2003, so it is a long time overdue. We would like to go to Scotland, I would like to show Jay all the places I visited as a kid and go and visit our friends north of the border. Some time as a family away from the stress and strains of the last 18 months and every day life would do us both good. We are just waiting on the finaliasing of the house sale now.

I am always hesitant to say life is good as I seem to spend my life waiting for the other shoe to drop. But life is ok, we love the house, we love the area and we are starting to find our way around. We have had friends over to visit, friends down to stay, friends booking in short breaks as they can't wait to start helping us tame the garden and turn it into our vision. There is no denying though the garden has good bones and will be a long term project. At the moment our hands are tied with nesting season. Many of the birds are now on their second broods as are the mammals such as hedgehogs.

This is just half the garden, as you see it from the upstairs bathroom window.

Lots of the shrubs need massively reduced down as they have gone wild. The garden needs a whole new fence around the outside, we want to plant, well I want to plant lots of native species to make the garden as wildlife friendly as possible. I would also love a paved seating area in the corner where the gazebo is. We are currently losing at least 15ft of garden due to the over grown shrubs.

We splashed some paint around the kitchen / dinning room as that was the one room that needed as much help as it could get. We had a tin of Farrow & Ball paint ( James White ) left over from where we were tarting up the old house prior to selling. The painting took a day and it felt nice to put a stamp on the decor. As we have quite a few renovations planned the rest of the decorating will be done as we complete each room.

I forgot to say last month we had a baby starling fall down our chimney. We had to call out a gas engineer, on a Sunday and fathers day no less, to move the gas fire so that we could free the bird. Thankfully it was unharmed and flew out through the lounge window when it heard its mum calling for it.

Health wise I am much the same. I am currently unwell due to Discontinuation Syndrome. I am currently coming off my antidepressant Mirtazapine / Remeron. I was only on 30mg and have been doing a plan as agreed with the pharmacist at my new doctors surgery. I am actually finding coming off this harder than reducing my morphine dosage, I have gone from 60mg daily to 20mg of slow release morphine. I have always been sensitive to antidepressants and have a shocking time coming off them. This one has been horrendous. I am going to have to taper much more slowly, I had got down to 15mg and started doing 15mg every other night. However since starting this part of the tapering I have been suffering severe side effects especially on the day following the night with no mirtazapine. So I am going to have to drop to 7.5mg and then do 15mg one night and then 7.5mg the next. I dont know what the fuck I am going to do after that as the side effects have floored me - flu like symptoms, diarrohea, fatigue, headache, vertigo, insomnia, sweating, nausea , dry mouth etc. Every time I come off an antidepressant it is so awful, I always say I will never do it again and yet here I am doing this for a 4th time.

Reducing my morphine dose has been a bloody doddle compared to this, I have managed to get down to 10mg twice a day in 12 weeks. Which to me is bloody amazing considering I have been on the stuff since 2011. The morphine reduction was my idea and wasn't pushed on me. I started doing it myself right before we moved as it had become clearer and clearer to me that it just wasn't that effective anymore. I also panicked, probably because I am 50 next year that if I got struck down with cancer and needed pain releif I could have totally fucked myself over by being on morphine at this dose ( which isn't actually high its only when it is above 60mg twice a day / 120mg daily is classed as a high dose ). I also wanted to see what my pain levels were like without it. One of the first things I found on reducing the night time morphine dose by 10mg was I was sleeping better and I had started dreaming for the first time in years. I also felt less foggy and had more mental clarity. I was amazed at this huge improvement and thats what spurred me on to continue.

At the same time I am slowly reducing the amitriptyline I have been taking for nearly two years due to the occipital neuralgia caused by the car crash. As I am not sewing as much currently the pain is better although I still have nerve pain in my left arm.

As you can see my life has changed in just so many ways, sometimes i just have to take a minute to catch my breath and recognise how far I and we have come. Despite having Mirtazapine withdrawal issues I am still feeling really happy, grounded and settled. Much more than I have ever done in my life

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.