Not So Great

Morning guys, very brief post. I managed to get round the block three times last week and have been this morning but that’s really all I’ve done apart from self care and a bit of light housework. I can’t even concentrate on my computer screen. Everything is too loud and too bright.

I am five days in to ‘the drugs’ and the side effects or amplified symptoms are completely debilitating. Headaches, rolling waves of nausea, surreal disconnected feeling, can’t sleep properly, sweats, shakes, diahorrea…. the whole shebang.

On the plus side, I’ve not been able to eat properly so I’ve lost a couple of pounds! Roll on the end of the first two weeks when things are supposed to get easier.

X

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Antidepressants

Ok folkarinos, so I promised to keep real about the journey, no matter what it brings or how difficult, controversial or embarrassing it is so here goes.

It’s not really been a secret that as part of being so unwell this past couple of months, my mood has taken a dive along with my energy and other symptoms. Earlier this week, I got it all on paper and wrote to my doc explaining where I’ve been at, she called me yesterday…

Antidepressants are extremly controversial in the CFS/ME world as they can often be seen as buying into the psychological paradigm that we are fighting so hard to get away from. Also, because a lot of us tend to be very sensitive to medications, these powerful drugs can make our symptoms worse. Some of these symptoms overlap with the stated side effects so stuff can start to get confusing.

After a tearful discussion with my doc about how I’m not doing so great on multiple fronts, I’ve agreed to gird my loins and try a different kind of antidepressant that has a wide acting effect on neuropathic pain, urinary issues and mood.

In the past, I”ve tried popular SSRIs and they have made me much sicker and have not worked for me. My doc knows this and she knows of my trepidation due to my bad experiences, however she wants me to try an SNRI and to consider its wider action applications.

People with long term chronic conditions can become depressed, I’ve been depressed before, I recognise it and I am not ashamed. So I’m choosing not to worry about whether this somehow gives the impression that all my health issues might be mental health based.

As I mentioned earlier with the comorbid overlap that can happen who knows where one condition starts and the other ends or which are side effects or even symptoms magnified by side effects. They can feed off each other. It can become very complicated and I don’t think you can exactly know or unpick the understanding of everything to the last detail, sometimes you just have to say “OK I’m not great, I want to feel better and this might help”.

I’ve always tried to keep an open mind, take control of my situation and not be precious about my diagnosis. I mean, I’ve been misdiagnosed so many times in the past so if I turn out to have ‘delusional arthritic purple monkey syndrome’, who cares right? I’ve learnt that having a name for the disease that hounds you isn’t always what it’s cracked up to be anyway. Just cos we can name it, doesn’t mean we can cure it, or even treat it in some cases, am I right?!

So I’m agreeing to give them a go based on the fact that I, personally, need that hope, I have to keep trying. I have to do what my medical advisers think might be best for me at the given time and in the given set of circumstances. There will be good times and bad ones and we need to just deal with what’s in front of us right now.

I could go round and round in circles in my head…. but I’m choosing this. I’m giving them a try because they might give me some relief for some period of time and I’m going for it with a good attitude. So wish me luck because I expect the next few days (settling in time) will be rough. X

Post Exertional Malaise

Hi guys

This is my first post in a couple of weeks and I’m going to keep it fairly brief as I don’t want to mess with the maybe seedling.

I am working up to a long piece – ‘What a month part 2 – the revenge’ as I’ve a lot of thoughts and feelings on the severity of the crash I’ve been having.

I have lost my entire summer to the Post Exertional Malaise (PEM) of two social events, one in June and one in July. I never made it to the third, my nieces wedding and there have been consequences for that.

I have not studied, I have not worked on my business, I have not so much as been out for coffee with a friend.

I started the year, as you know, with a new motto – to live and enjoy things as much as possible and to hell with the price of the PEM. I thought it would make me happier, less isolated and it’s a life model that some others have had success with… but it’s definitely not worked for me.

I’ve now been stuck at home, more isolated than ever, more misunderstood than ever and increasingly unwell and upset.

As of now, I am going back to what works for me. A slow and steady routine with almost no socialising. A little writing, a little study, a little working on my business plan, a little LIGHT housework and cooking. Davy bought me a stool so that should help.

It was nice to have him home for two weeks and I shall miss him heaps and tons now that he is back at work. It’s so boring for him, bless him but he never complains whilst I apologise profusely.

We did venture out for a couple of hours one day to the cinema to see the documentary ‘An Inconvenient Sequel’ and get some lunch. I crashed out almost as soon as we got home but at least I made it over the threshold… once.

On a positive note, I have also managed 3 times in the past week to walk round the block. It was hard and took me ten minutes or so to do what Davy can do in a third of the time but I am trying to slowly raise my fitness to help with my day to day and to get some fresh air.

I can’t help it if people are wilfully ignorant and hurtful but I can insulate myself from it and keep telling my story. One day at a time.

Speak soon
J

This Makes a Lot of Sense

CPET
I can often do things for a day or two but I can’t do anything consistently or just when I want to. I saw something else recently too about how we build up more lactic acid in our muscles which certainly explains the aching heaviness.
Published in Clinical Physiology and Functional Imaging, 07 August 2017. The New Zealand pilot study on 2-day CPET is not the first to examine CPET results in…
MEASSOCIATION.ORG.UK

Crash & Curry

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Malaysian Prawn Curry – yummy. Last night’s effort was better than my first effort. No rice obvi. I fell asleep quickly, as predicted.

Crash update – still in bed. So unbearably tired have slept 11 hours but don’t feel like I’ve slept at all. Back is killing me again. Also I keep forgetting to mention the aching in my chest, sometimes sharp sometimes dull. It’s on the surface though, like my breastbone hurts. Head pulsating again today and I so badly want to go back to sleep. Must get up. Its hard to be mindful of your whole body when so many different bits of it are screaming at you.

Seedling clearly wasnt ready but I’m not so surprised, that is not unusual. Hubby on holiday from tonight for two weeks thank goodness.

I’ve only left the house once for about 20 mins in the last two weeks, you’d think the walls would be closing in but the days drift into one another and I’m safe here.

That’s all she wrote for today and perhaps for a few days. The point this week was to give an insight into the drudgery of being in a crash.

This is just temporary (I keep saying to myself) and I will come out of it. To at least be able to get up and do my baseline without struggling, that is the goal…maybe in a few days or more likely weeks (because I will definitely take a step back by travelling and attending a wedding next Sunday) but for some this is how it goes on month after month, year after year. I remember what that was like, 8 or 9 months was my longest I think. I don’t want to go back there. Please let it be weeks, I bargain with the ceiling.

Stay strong my M.E.ers ❤