Sorry I haven’t written to you, you must be feeling left out. For the last few years one of my first blog posts in January has been me begging for the coming year to cut me a bit of slack. I didn’t bother this year as I really couldn’t see how things could get any worse than they already were. What an utter fuck up that was! Someone in the cosmos really has it in for me. 2016 was supposed to be my year, new consultant, new approaches, things were going to turn the corner. They turned the corner alright and then went up shit creek without a paddle. Silly me.
I am painfully (excuse the pun) aware that my blog hasn’t exactly been a barrel of laughs of late. It’s difficult to find amusing anecdotes when it feels like your life is falling apart. I still laugh, do things I enjoy but the time spent doing them is less. Please hang on in there as you will laugh when you watch the video clip later in my post. It isn’t all doom and gloom….promise.
I am finding it difficult to come to terms with this new turn of events. In all honesty if I could shut myself away, at this moment in time I would. It isn't depression before any amatuer psychologists attempt to diagnose me. I am back in the five stages of grief, mourning for the life I had before, not before, before, as in pre 2007, just to go back to 2015 levels would be absolutely fine with me. And I moaned a lot then because I thought I had it bad. You don’t realise what precious little you have until it’s snatched away from you.
The last few days have been utterly horrific. Just when you think the pain can’t get any worse it ramps up a gear. The nausea and vomiting leave you clinging onto the toilet bowl, too exhausted to cry and just wishing that it would stop. I sometimes, when it’s like this, wonder how the hell I will get through it the next time it happens and then I do. The 22nd June can’t come soon enough but at the same time I know it is just another small step on this journey, which could go on for many more months before anything is done. I have found out through the grapevine that all spinal surgeries of which an epidural blood patch is one have been stopped for the next two years at the hospital I have been referred to. They are so behind on their planned spinal surgeries that they have closed their lists to new referrals. I am so screwed.
So here I am 2016, it is coming up to 1am and I am wide awake. Another night of insomnia beckons. I thought I had cracked the insomnia last year but it’s back with a bang. Insomnia for me is wide awake most of the night. If I am very lucky I will get a couple of hours sleep between 4-7am. The worst nights are when I sleep heavily for an hour or two and then spend the rest of the night awake. I really feel robbed then. Tonight is how it’s been at least once a week since this pain started.
Due to the extreme (and I am not being dramatic as there have been times this week I would have willingly cut my head off) increase in pain, I have had to increase the amount of morphine I take, particularly oramorph. If I can take the medication early enough and not try to soldier on (which I do a lot) I can get on top of the pain. The side effect I suffer with because of the increased dose is insomnia. So I have a choice, less pain and no sleep or some sleep and lots of pain. Tonight pain won and I took the extra morphine.
So I am downstairs on the sofa, speaking quietly into my chromebook so that it can take all my rapid thoughts down. Because the other side effects I suffer with is what I call the morphine itches, so literally every part of my body is itchy and I will scratch myself until I bleed and I get hyper. I can only imagine this state of hyperactivity (which is a bitch when you can’t move around) is comparable when someone takes speed (amphetamine) my thoughts race at a million miles an hour and I fidget incessantly. I just can't settle because my brain is trying to unlock the secrets of the universe. If I hear the Unicef Indian health campaign advert one more time on BBC World Service ( - please watch the video as it is a catchy little ear worm that you will find yourself singing at all hours.
I will lose the will to live lol! Although I have to admit with the video, the song is even better. That is one side effect that I do not suffer with, my poo’s go quite happily to the loo. Which always amazes my health care professionals, I should be shitting bricks apparently. It is only codeine that constipate's me, just thought whilst we are sharing….
Jay (hubby) has caught me singing the Poo to the Loo song a couple of times and I am sure he thinks I am slowly losing it.
I have reduced the amount of time I spend on the internet quite considerably. I now dip in and out, I have very little patience for people and I seem to be taking things quite personally. 2016 you have made me quite an angry person this year and I am not enjoying it. I try to support my online friends as much as I can but when the head pain is bad I get very light-sensitive so spend a lot of time wearing tinted lenses to take the edge off the glare from the screen. If I don’t I find I get pain deep inside my eye. Plus when I am in pain I can be a right grump. People don’t want me to be moaning and griping, you have to be a brave little soldier, otherwise you are letting the side down.
2016 has been quite an isolating experience, I spend a lot of my time dreaming of going away and spending some time in Scotland in the middle of nowhere. It is my happy place. I have always loved the countryside of the highlands and spent quite a bit of time in Scotland when I was a child. It holds very fond memories for me. I think this longing for Scotland is probably a longing for change. I can cope being alone that isn’t an issue, I have never exactly been a social butterfly, I have a small circle of close friends but really I don’t let anyone in. Someone I worked with years ago told me “I have never known anyone as intensely private as you are. You never talk about yourself.” I find this hysterically funny now I have a blog as it is the one self-indulgent thing I do. It’s my diary, my confidant but even then I don’t fully express how I feel. I write what I think is acceptable to others because it is true, I don’t let people in.
My aims at the start of 2016 were to keep blogging (tick), lose some weight (as always), submit some articles to various online publications (not happened, probably should be moved to bucket list), start planning for the future, hubby and I have talked a lot about a holiday we would like to have in the future. We would really like to do the Highlands and Islands of Scotland over three weeks, so I could have lots of rests in between activities. In all the years before now I don’t think I had really thought about the future at all. I think I had become acutely aware of how quickly things can change and no longer saw the point in making plans. Now I realise that hopes and dreams are what keep you going.
So 2016 we are rapidly approaching the halfway mark and I am sure there are lots more that you want to give me. I am ready for you (well as ready as I can be). All I ask of you is that you leave my friends and family alone, that they have a better half of 2016. Spend all the time in the world throwing things my way, I will keep you busy but don’t make life hard for them. That is my one wish.
“Take the poo to the loo!” ha ha ha ha ha ha!
Because I am feeling evil I will leave you with this ear worm…..enjoy!
I have had a couple of good days at long last!
My go fund me campaign to purchase a new wheelchair and power trike attachment can be found here "Help me walk the dogs again". For more information about the campaign please read this blog post : Pipe Dreams.