Friday the 6th of July 2018
Well fuck me…. what a week. Seriously, I know I’ve said that before but just wait till I tell you what’s been going on.
Tuesday was the last blog update… fucking Tuesday and I thought that the next time I flipped the laptop open read to write I’d be jumping around like a spring lamb feeling incredible because of my new bigger boy painkillers. I also thought that would happen on Wednesday. Now, I was apprehensive, as you know, about taking the Gabapentin because there was a very real risk that they’d pile all the beef I’d worked so hard to shift, straight back on again. I’m beginning to like what I see in the mirror again so I was going to self manage it as much as I could but I knew I could balloon and had bargained it would be wroth it for even a little from the pain. What I hadn’t really expected though was that I would be one of the very few awkward people that would take a reaction to them, especially not when I was still at such a low dose.
If you’ve been following the Facebook page you’ll have likely already clocked the video I posted on Wednesday from bed. If you didn’t watch it, I don’t blame you, who wants to watch a fat ill bird cuddling a cat; you’re forgiven. I watch it back now and I can see how out of it I was, my speech was going and my eyes were all over, but I think it’s only now we’re at Friday that I realise how serious my reaction could have been if I’d chosen to plough on with the meds. See I almost collapsed on Wednesday morning. The drug had been building in my system since Monday night but I’d not even got to the three doses of 100mg a day before my heart rate increased to a really uncomfortable speed, I became dizzy and felt really out of it. I guess I should have known they weren’t really agreeing with me given the nightmares I’d been having since the first night but I genuinely thought that would settle…I mean, it’s not uncommon for me to dream that Theresa May is in the house trying to steal Eli’s piggy bank so, I took it with a pinch of salt. My heart would speed up every time I took a pill but it wasn’t scary, just odd, well that was until Wednesday morning when it felt like it was actually trying to escape from my chest. It wasn’t an ambulance job, I knew that, but I also knew that we’d be daft to ignore it. Both Christiaan and I were sensible enough to know that what goes up, must come down, so he kept an eye on me and called the docs to let them know what was happening and we both agreed that my relationship with Gabapentin was over. After a quick follow up call with the doc, who agreed with us, I spent the rest of the day in bed as my heart rate slowed and my dizziness passed… but I’ve been absolutely fucked ever since.
I guess my body has been working extra hard to try and normalise but the pay back for that is that I’ve been fit for nowt these last three days, in fact, I’ve spent the majority of time in bed or sat on the sofa and I still feel like I’ve done 10 rounds with Tyson. So, I’m kind of further behind where I was on Monday when I walked into that docs in a fuck tonne of pain asking for help, which is a depressing thought. I guess at the very least my jaw has eased now so that’s ONE thing off the list – hooooorayyyy. The bone pain continues to be an issue though, I know they can’t treat the other symptoms, there’s no magic pills for that but if I could only get the pain under control I know I’d feel so much easier. There’s only two other options available to me that I haven’t yet exhausted; another course of epilepsy meds which work in the same way as the others but should be better tolerated or, a referral to my local NHS pain management clinic for a course of CBT and physio. Neither of which I’m willing to entertain. I’m not dipping my toe into the world of epilepsy meds again, I’m not strong enough at the moment to take another relapse and the list of side affects is fucking frightening. They can be mood altering and often the pain killing effects wear off as your brain gets wise to what you’re trying to do (fuck with the pain receptor stimulus). The pain clinic… well, to begin with it gets a really bad rep amongst the local ME community. There is nothing wrong with my muscles or core strength that physio could possibly touch and as for CBT…. no. I’m wise enough to know that if I could affect positive PHYSICAL change via the power of my mind I’d have done it by now, fuck we all could have, M.E would be a thing of the past and we’d have 250,000 more fit and healthy people out and about in society. As it stands the M.E. Association don’t believe either of those options are winners and at this moment in time they have my full trust; they know their shit and I’m willing to gamble any energy I have playing russian roulette with a list of “never gonna happens”. Now don’t get me wrong, I’m a huge advocate of the likes of mindfulness and CBT and refer individuals at work on a regular basis… but for psychological or mental well being, not for physical pain. I have absolutely no desire to waste my time, or the clinics time and resources pissing around with any of that in the hope that it could make an impact on my pain levels. If I was struggling to deal with this bastard of a journey, fair enough, I’d be there with bells on but as it is I’m fairly pragmatic about it all; I’ve been dealt a shite hand, I just need to get on with it and live within my means. End of.
This is where having the sort of relationship I have with my doc is a good thing. She knows me well enough to know that if I’m turning down “help” that it’s because I’ve got good reason to, and although she may disagree with me, she respects my decisions without judging me. Both she and I were in agreement that maybe adding appointments and travel into my day wasn’t a good thing right now, (especially when I feel that the output is questionable) but that doesn’t mean I’m not motivated to get better, it just means I need a bit of time to lick my wounds and plan a way forward that fits me. To be 100% honest I would rather keep going as I am – there’s no cure, I know that, she knows that and I am very realistic about what life will look like going forward. I’m hoping this is only a crash but I’m prepared for this to be the new version of life for us if needs be…. I might not like it but I am prepared.
I tell you what I wasn’t prepared for…. fucking insomnia last night. It’s my own bastard fault of course, I’d been chatting to a friend online and said the fateful words “I’m lucky that I can sleep at any time, insomnia isn’t something I struggle with” – what a fucking idiot. I was falling into bed I was so knackered last night, literally yawning my chops off from 7 onwards but it was 3.50am the last time I looked at the clock. The cat had me awake at 4.30 and then Eli woke up just after 6. What the actual fuck? I just lay wide awake, I had nothing on my mind, I just couldn’t sleep. So, after Eli went to nursery at half 7 this morning I crawled back into bed and slept till just before 12 – an epic snooze by anyone’s standards. Do I feel refreshed? HAVE YOU NOT BEEN LISTENING *grin* NO, us M.E. crowd never feel refreshed by sleep, we never feel better for having had some kip… it’s just a necessary action to stop your body and mind shutting down!
I would have slept all day I think but I needed to get up, it’s fucking roasting here today and although I’ve not been well enough to sit out in the garden for the last few days it really bothers me when I’m wasting away in bed when the suns shining outside. Plus, we were expecting a delivery….. Yes another one. I emailed Simba yesterday, the people who made our mattress to say it had gone a bit lumpy after it had been stood on its side while the room was being carpeted and was there anything I could do to fix it. Half an hour later they emailed me back to say that it was covered under the 10 year guarantee so they’ll send me a new one…. it’ll be with me today. Oh and they’d take the old one away for me. How fucking amazing is that? I didn’t have to argue, I didn’t have to play any sympathy cards, I just said it was lumpy and they said they’d send me a new one. Possibly the best customer service I have ever ever had. True to their word the delivery lads have just been and swapped my mattress for a brand new one….. Simba – you rock. We’ll need to put up with that weird smell that memory has for a few weeks but I’ll take that over a lumpy mattress any day of the week.
So, after a pretty horrendous week I am so fucking relieved it’s Friday today. Christiaan is finished work, Eli’s home from nursery and we can now spend the next few days together before the whole cycle of knackerdom starts again. It’s got be said, Christiaan has been an utter gem his week. There’s not really a day goes by when I don’t feel incredibly lucky to have him but I know this week has been tough on him too. I can imagine it’s pretty frightening seeing your Mrs in the state I was in on top of all the other shite that’s going on, but he’s just got on with it. He’s managed to work, see to Eli when he’s not been at nursery, look after me and take care of stuff round the house, and that’s not all – he’s also bought me a huge bunch of sunflowers to cheer me up. I love sunflowers but I love the fact that he listened when I told him that even more. That’s what you need when life is kicking the fuck out of you; someone who is unequivocally on your side. My health may be shite but I’ve won the lottery when it comes to my wee family. Look:
I’m really hoping that I start turning a corner tomorrow, Eli’s been invited to one of his wee pals birthday party’s up at the Loch and I’d love for us to go, even if its only for an hour. It’s a messy play party and I know Eli will have a ball so I’m going to do all I can to get there; even if it’s the only thing I manage tomorrow and I need to sleep before and after to let me do it. Sunday is normally swimming lessons for laddo but the class has broken off for summer so I think Christiaan will take him to the wee local pool by us so that he doesn’t get out of the way of being in the water but other than that…. we can take the weekend as it comes. Just as well really because I have no idea what’s on the agenda for me in terms of mobility – possibly very little but we have the car, I have a picnic blanket and I am prepared to sit down in very unlikely places so that we can get out as a family.
In other, nicer news, the bedroom is now FINALLY complete with the arrival of my long awaited mustard yellow chair and the most epic Turkish lamps. I love it. So here, in the absence of anything remotely fucking happy going on in this blog – have some pics of my bedroom and apologies if you’ve already caught sight of them on Facebook!
I know this one’s been a bit heavy, especially for a Friday night… I’m sorry but… well.. welcome to my fucking life. I won’t sugar coat it, it’s rotten and I guess if I want to raise awareness I need to show you all the shit bits too.
Don’t feel sorry for me though; it’s burger Friday and I had a lovely time with my dinner, I have a lovely new mattress to sleep on and my husband and boy are here to cheer me up.
Tomorrow is a new day people. Tomorrow will be better.
- My new chair and lamps have arrived
- Epic customer service from Simba
- Erm…. no more nightmares and less chance of turning back into a fatty now I’m off the wacky pills
- Two days with the blokes in my life and I’m going to enjoy every fucking minute of it
- Oh and I’ve written another guest blog of the Two Chubby Cubs page again… watch this space for a publish date
- Pretty self explanatory I would have thought but…. well… the pills and I had a falling out
- It doesn’t look like we’re going to get my pain levels under conrol
- This week has been fucking awful
- I’ve missed many many nights writing
- What’s on the menu Mellars?
- Breakfast – Sleep, with a side helping of drool
- Lunch – Fruit and a yoghurt
- Dinner – Come onnnnnnnnnnn! It’s Friday, you know the answer to that.
Are you new round here?
If you’ve just stumbled across TryingToDoItAll and have no bastarding idea what’s going on you should probably go back and read a few blogs from the beginning. Don’t panic, I won’t ask you to read them all, but these few posts will help explain. Oh stop sighing, it’ll only take you a few minutes. Fucks sake.
- Well you’re here, so you may as well get comfy
- Can’t stop M.E. now…. ahmm having such a good time, ahmm tickling your balllssss!
- When are the grown ups coming?
- Major surgery…again?
- You’ve got to be kidding M.E.?
#mecfs #meawarenessuk #mewarrior #silentillness #swearymum #meblogging
ME Blogger extraordinaire… not really