So little, yet so much

I don’t normally write when I feel like I do now, but I feel it’s important.

I didn’t do a lot today. Like every day it’s starts early, getting myself and Bella breakfast and take my meds. Around a 20 minute routine which is always followed by returning to my bed to lie down and read my kindle while waiting for my meds to do something…anything. I don’t go back to sleep, though I could. I try to keep a normal sleep routine because one day I’ll be back to working and it’s important. Anyway I got up around 11 when my dad came over for coffee. He left just after 12 and I packed up a puzzle I’d completed over the weekend. I then had a phone call with a good friend and relaxed for an hour. I then hoovered the living room, filled up Bellas kibble bin and put the recycling out.

I know, it’s boring and not a lot happened. But now I am too the bone tired and my pain is a 10/10. I think it’s important to discuss what overdoing for me looks like. This is it. This is why leading a normal existence is not possible for me.

But I soldiered through and pushed myself to prepare fajitas for dinner. I’m not that safe in the kitchen anymore, and my energy and pain levels don’t allow me to cook often. But I think it’s important to push through sometimes, though doing so means tomorrow will undoubtedly be horrible. But I need to do normal things sometimes. Sometimes I need to feel normal.

A jumble of thoughts from a jumble of a woman

I haven’t written at all the last few days. Thursday was the best day I’ve have mentally for months. The first day for as long as I can remember where there were no suicidal thoughts or feelings. The caveat was I felt like shite.

However, I got and did because those days are rare. The day before I’d spent hours with a friend talking and actually laughing. Then on the Thursday another friend came over and again we spent hours talking and laughing. Then I had therapy which was just ‘chewing the fat’ and then my dad came over for coffee. BUSY. Well, busy for me, just a standard day in my previous life.

But my day started with a text. My phone lives in do not disturb so I pick and choose when I have the capacity for contact but I do check it periodically for anything important. And I woke up to something important. DWP text me to say I had been awarded pip and a letter would be through in due course with further details.

This is a double edged knife really. On one side, I’ve finally been seen. Someone finally noticed me and my struggles. On the same side was also the relief of easing my financial stresses. Because all my funds are gone and £300 a month doesn’t stretch very far at all. Then there’s the other side of the knife. There in black and white…I’ve been deemed disabled. But the relief was what I felt most.

When I discussed the mixed feelings with my therapist and raised the ‘I’ve been deemed disabled’ part she raised a very valid point. It doesn’t mean forever. Right now, someone has acknowledged your struggles and deemed you worthy of help. But just for right now. Not always, not forever. Just this current period.

Maybe that was the kick of my good day, because we ALL know the toll financial stress can have on you. It’s heavy. Mine is also laden with guilt because my situation directly impacts those around me. My mum in particular, who not only cares for me but has been covering the bills while I’ve had barely anything coming in. So my financial struggles then in turn cause her financial struggles. So maybe that text just helped me feel able to breathe freely for a day.

My head hasn’t shown much positive response yet. I had that one good day but it’s been hell since. I get different types of pain in different locations around the right side of my head. Usually not all at once, just one or two types/locations at a time. Since the CGRP inhibitor it’s been all of it switched on all the time. So my out of 10 pain hasn’t changed much, but with it all switched on the out of 10 is irrelevant because it could be a 3/10 and still suck. But generally it’s a minimum of 8/10 and I see full marks every day.

I also feel super exhausted. Obviously being in pain constantly is exhausting but I wake up and feel like I haven’t slept and it’s too the bone exhaustion. Bella is also full of beans. My life has changed dramatically and so hers has too. She’s gone from being around other dogs and on 3-4 walks a week, with one usually been around 3 hours. She’s never been a daily walk dog, she’s lazy! She also went everywhere with me, the office, friends houses, pubs and cafes, the beach. She was there for it all, by my side near permanently. So will I’ve become this largely house bound exhausted person who’s rarely able to do anything it means she’s had to become the same. Like I said, she’s always been lazy but dogs get cabin fever too. Her separation anxiety has also got worse if I do manage to get out for a few hours and she doesn’t come. But then my separation anxiety from her has got worse too! Despite being my lazy dog, she’s bored and under stimulated and lonely. In turn, she’s nearly 10 and going through the terrible twos! I wish there was more I could do with her and for her. For both of us.

My Saturday mornings used to be so different. We’d get up early (like I also do) and jump in the car. Swing via Tesco express, crab coffee and a pastry and then drive out to Vallis Vale in Frome. Arrive 8am latest and leave somewhere around 11/12. It’s her favourite place and mine. The one place I can fully be present with no thoughts or emotions. Just at one with my dog and nature. Out of everything I’m no longer able to do this is the part I miss the most. The drive would be too much for me, and if someone else drove it’s not worth it for the distance I’m able to walk before my pain gets too bad. Also, while I enjoy the occasional walk with company, this particular walk became my alone time. My time to be grounded and at peace. So it’s not the same with company.

I told myself that when I get better before I even consider going back to work I will take a holiday. Because I never have, and I don’t want to return to the same ‘work before everything else’ mindset. I can’t handle stress anymore and from this I’ve learned what is important and what is not. My core values. But I was wrong. The very first thing I’m going to do is take Bella to Vallis Vale for our long walk. And I’m going to do this as often as I can. And we’ll go to the beach again, and watch the sunrise at the top of Cley Hill and have ice cream at Shearwater. We’ll do it all because while I know I need a holiday, my dog does too!

Dear Grandad

My sister, Dad, Grandad, Brother and I

Today my Grandad was cremated. We aren’t having a service, at some point we will scatter his ashes together with his loved ones.

It feels very strange. Aside from the fact I’ve seen him nearly every week of my life, it somehow felt like it’s not real. Until today. Until I knew he’d been cremated, and that he is in fact no longer with us. With me. I had a foolish belief that he would always be here with his smart mouth and dark humour. There’s never been an occasion I’ve been with him that he hasn’t made me laugh, usually within the first few minutes.

I didn’t know how I would feel today but it did give me pause. I knew he was being cremated this morning, and so I felt uneasy until midday came around. And without a service I felt so lonely on his behalf. (I do that a lot, feel other peoples feelings.) So I wrote him a letter. I won’t share that here, perhaps I’ll read it when we scatter his ashes. But for now that’s my own deeply personal writing.

My Grandad was a complicated man and I felt I could really relate to him on that. My truth with him was that he was a wonderful, strong and gentle man who was grateful for every visit or encounter. He taught me so much, and I know family gatherings will feel a little less whole without him. Every Christmas I’d make sure he was sat next to my sister and I’d sit across from her. Seeing them wind each other up, in a jovial way, was something I’ve enjoyed over the years. Not in a laugh at making someone else suffer sense, but in a he gave as good as he got and loved it. He just wanted a good bit of banter.

This man introduced me to his children, and in turn their children. As a result my sister and I grew up regularly seeing and making lifelong memories with this extended family of ours. Beautiful memories as a result of my wonderful Grandad, and of course my Grandma. One of the strongest women I know to match one of the strongest men I know.

But in his death I’ve learned more about how complicated he was. I know more on the pain he caused others. That wasn’t the man I knew, or the man I ever met. For that I am forever grateful because he ensured he gave me the absolute best of him. For those he didn’t always give his best to I can only wish he had. I wish more than anything that they only ever knew the man I did. But I also know that’s not how life works. It hasn’t changed my views on him because it doesn’t change my truth and my experience. But I know I can respect and honour the experiences others had without diminishing mine.

I truly believe the hurt he caused came from a place of fear, mostly fear of vulnerability. I mean I don’t know, I could be way of the mark here, but that’s my view. It doesn’t change or excuse what he did but he also came from a time where you don’t face up to your demons or your suffering. This is where I can relate to him. Except I’m in a time where it is increasingly encouraged to face your fears, to explore them and heal them. Because hurt people, hurt people. And my fears and traumas were hurting people, myself included. I now know better.

I’ve digressed a bit, but I wanted to write something about one of the most wonderful men I’ve had the fortune of being so close to for 29 beautiful years. A man with whom I share so many memories and a man who I hope knew he left his mark in this world. In me.

I didn’t intend on putting the more personal posts in my blog, but I realised I want it to be a true reflection of me, my thoughts and my life. About things that are important to me and not just this journey I’m in with my health at the moment. And not for the benefit of others, much as that is the aim of sharing my blog. But it’s still my journal after all, and so if or when I choose to look back at it I want to be able to see it all.

Asking a lot

Here’s a tough one I just admitted during my therapy:

I don’t want the CGRP inhibitors to work.

There now that’s out I can discuss it a bit better. I’ve been on medication of varying levels since I was a young teenager. At the age of 13 or 14 I started having severe migraines without the pain. My pupils would be massive and everything was blurry, they called it silent migraines. This progressed to painful migraines. Then my joint issues started. Then Hemicrania continua joined the party. I’ve been a pill popper for as long as I can remember and I’m sick of it. Sick of having to fill my body with poisons to have a normal, low pain existence.

I find it demoralising to sit filling up my pill box. I currently take 8-10 pills a day. 5 different medications, plus now the monthly injections. At times this has been as high as 14-15 pills a day. It’s been at this level for at least 7/8 years. But daily pills for well over 10 years.

I am sick to death of it. Sick of relying on drugs that cause their own additional issues. 3 of my daily pills are purely for protection from what the other pills do to my body.

Currently I am a lab rat. We trust in medical professionals and assume they know what they’re doing. But even my neurologist says ‘I don’t know what to suggest’. She said that word for word earlier this year. So they’re throwing more drugs at me in the hopes something will work. But they’re throwing blind because they just don’t know. There’s little science behind what I’m going through or the treatment being given.

So I don’t want the CGRP Inhibitors to work because it’s just another drug. I don’t want to take pills anymore or injections. I don’t want to be a lab rat or suffer the side effects of drugs. I’d much rather give the occipital nerve stimulator implant a chance because it’s not a drug or poison. Of course is is a foreign body surgically implanted into my body, but it’s not more pills. So I’m sitting here hoping that the treatment I’m on will work, but also that it won’t. It’s so conflicting having these feelings. I want it to work, because I need to get better because I know I can’t stay like this for the rest of my life. But a foreign body sits much better in my soul than more drugs do. I want to take as few drugs as possible, preferably none at all.

I know that’s asking for a lot. That I am desperate to find something to help cure me, but I also don’t want that something to be medication. It’s a tall order by anyones standards. But it’s my truth.