Wednesday the 25th July 2018
Ahhhhhhhhhhhh Wednesday, it’s like my very own mini break is a Wednesday. There’s no child. There’s no routine. There’s no pressure to be anywhere, talk to anyone or get out of bed if I don’t need to. Just was well really because it’s 10.55am and I’m sat in bed with Netflix on writing to you crowd. I’m still in my jammas, in a layer of duvet because even though it’s warm in the house, I’m still cold. I’ve had some breakfast and most importantly; I am not covered in piss.
I packed Eli off with 6 t-shirts, 6 pairs of trousers, 6 pairs of socks, an extra pair of shoes and 8 pairs of pants. Technically you could say I’ve moved him out. People leave their parental homes with less all the time right? I think I had less than that when I left? Whats the betting the nursery get all prissy about him moving in and he needs to come home again though? I’m sure it’s a dead fucking cert when he demonstrates his “spirited” nature the first time they take him to the toilet. He and I had a big long talk this morning before he left, well as long as you can get with a toddler which is about 20 seconds. He knows he only does “pee pee’s on the toilet”, he knows he shouldn’t piss his pants, especially not with the judgemental faces of fucking Paw Patrol looking up at him from his nut sack but…. I suspect he gives none of the fucks. Actually if he’s not shat all over the nursery floor by now I’ll be surprised and impressed…. he’s not shat in well over a day and a half – it’s overdue.
So he’s gone to nursery and I have, for the first time in about 10 days exhaled properly. It’s only when I truly relax that l realise just how fucked I am, it’s been a stressful time what with one thing and another and I feel like today needs to be a bit of a black hole in the week. A day where I don’t need to see any one, or talk to anyone – a day to let my brain rest and sort it’s shit out. Fuck knows I’m going to need it tomorrow for this bastard assessment (more on that further down). I made this for the Facebook page this morning and it pretty much sums up how I feel today…so here, for the benefit of readers who have not yet been lead like lambs to the slaughter to our Facebook banter; this is for you.
I’m chuffed I’m in bed to be fair, every bone in my body is screaming and my brain has been fizzing and threatening shut down since late yesterday. My speech isn’t great, I’m aware I’m stumbling and bumbling a bit…. what can I say? Very fucking little – BABOOM! STILL! STILL WITH THE HUMOUR! I’m here all week folks…. actually, who the fuck knows.
So short story is; I’m exhausted. The last few days may have been low impact in terms of physical effort but mentally they’ve fucked me. Being confined to the house with a toddler is hard work. Being confined to the house with a potty training toddler is like a form of fucking torture. Seriously, they could break the hardiest, most evil of war criminals just by chucking a toddler in their cell for a few hours with no telly and no nappy. If I was to hear “my do my myself” or “I don’t like that one” one more time I was going to find a sweet old granny and punch her right in the chops. Repeatedly.
So today is all about me. Selfish innit? I’m not fucked if you answered yes there by the way, I can’t hear you any road so I’m just going to pretend like you’ve not answered and keep talking about me some more. You’re welcome.
I have done something positive today though. I’ve written that letter to the docs I was wittering on about last night. I wasn’t an arsehole in it because it wasn’t a complaint, like I said in last nights blog I totally understand why they were pissed off with me wasting their time – but I don’t think they handled it all well given the circumstances. The letter isn’t a woe is me, I don’t need their sympathy, but it is a “you were a bit shit with a difficult situation; here’s what it’s like to have M.E. – educate yourself and your team and respond a bit better next time”. I’d gone to the ME Association and copied a bit directly from their website which outlines all of the fucking nonsense I’m trying to juggle; including cognitive impairment and included it in my letter so I’m hoping that as of this afternoon they have a wee bit more awareness. I’d understand the approach if I’d been out getting my hair done when I forgot the appointment but it was a wee bit like pouring salt in the wound because I’d been pretty much laid up in bed the days before. Sods law innit. Anyway, I outlined I wasn’t a ditsy mare, I was ill and actually their letter threating dismissal from the practise did nowt bar make me feel a lot worse about a situation out of my control. I reckon I was fair but fucked off, which is what I was aiming for. Tell you what though, I better make fucking sure I don’t forget my next appointment on the 1st of August. Consider it your duty to remind me…. several times before 9am please. Ta.
While I was writing my letter and including the blurb about M.E. though I thought back to how many times I had been asked what M.E. actually was by a lot of the blog readers. I know that there’s a good chunk of you who read that are normal, and a chunk who have M.E. or similar chronic conditions. I’m always surprised that so many normaltons read my incessant moaning, you’re either sadists or have the same warped sense of humour I do. Either way, you’ve found your village. Come in, sit down, get comfy and polish your best swear words for tonight we shall party until at least 8.15pm and then it’s bed time. Anyway, with that in mind, here are the factual bits that I weave in and out of my blogs. You might recognise some of it amongst my sweary shite because contrary to popular belief I am actually trying to embed your brain with M.E. knowledge so you’re not the kind of twat that thinks us lot are just tired. So here, this is what I included in my letter – it breaks down the 7 most common symptoms for M.E. patients. This is my life in 7 paragraphs to varying degrees:
The seven key symptoms for making a diagnosis of ME/CFS are:
- 1. Post-exertional malaise or symptom exacerbation: the key diagnostic feature of ME/CFS is the way in which symptoms worsen after activity is increased beyond what the patient can tolerate. Such activity, physical or mental, has a characteristically delayed impact, which may be felt later the same day, the next day or even later. This is followed by a period of relative recovery which may last for days or even weeks. The amount of activity that provokes increased symptoms is related to severity and in some people, is very modest.
- 2. Activity-induced muscle fatigue precipitated by trivially small exertion (physical or mental) relative to the patient’s previous activity tolerance: which may be accompanied by muscle pain.
- 3. Cognitive dysfunction: commonly including problems with short-term memory and working memory (the ability to deal with tasks quickly), problems with concentration and attention span (especially affecting visuospatial tasks), inability to plan or organise thoughts and problems with word-finding abilities – anomia (difficulty in naming common objects) and dysnomia (the inability to give objects a correct name).
- These problems are often referred to as ‘brain fog’ by people with ME/CFS. Cognitive dysfunction is exacerbated by physical exertion and stress and may be more prominent where there is clinical depression. Cognitive dysfunction alone is often severe enough to cause a substantial reduction in previous levels of occupational, educational, personal and social activities. Long-term memory is not usually affected, and progressive mental impairment is unusual. If this type of cognitive decline occurs, further neurological assessment must be considered.
- 4. Pain: that can be persistent and difficult to control. Pain is often muscular, but it can also be rheumatic or neuropathic (where it has a burning or searing quality and may be associated with paresthesia and other sensory disturbances). Some patients may also have a fibromyalgic component to their pain. However, a significant minority of patients experience little or no pain.
- 5. Sleep disturbance: non-refreshing pattern that can include both hypersomnia (early in the illness) and insomnia, reversal of sleep rhythm (especially in children), vivid dreams and ‘restless legs’.
- 6. On-going, flu-like malaise: A general feeling of ‘being unwell’ that is accompanied by sore throat, tender lymph glands and problems with temperature control (e.g. feeling feverish, sweating episodes).
- 7. Autonomic symptoms: including orthostatic intolerance. Autonomic symptoms are very common in ME/CFS, and orthostatic intolerance refers to an inability to sustain upright activity. Symptoms of orthostatic intolerance occur after standing up from a recumbent or resting position or after prolonged standing. They include lightheadedness, spatial disorientation, feeling faint, sweating, palpitations and fainting.
Joyful aint it? I wish I could say this is why I swear so much – it’s not, I’ve always had my mouth in the sewer, this just gives me more of an excuse when people start judging me and frowning 😉
I’m really hoping that within time the CBD takes care of point 4. I’m 11 days in now so only 3 and a half weeks before I should be able to tell if it’s working or not. I know that leaves me with the other 6 points on the list but there are no other options to control those really bar being sensible with my energy so I just need to get my head down and battle through. There will come a point where I stop getting worse I hope, and at that point I’ll be at what’s known as a plateau in the illness. Those periods of time are actually really manageable because your playing field is level – you get a chance to work with your body and understand what it’s capable of and start to build life around that. I had a plateau last year after my initial crash of 4 months. From May to around December last year I was doing alright really. I wasn’t fit and healthy but I could walk round the park with buggerlugs and know that after a rest in the car I’d be alright to walk from the car to the house. I could work, I could speak to people on the phone, I could function without endless hours sat in bed or on the couch. Then something changed after Christmas and I was able to do less and less over the weeks and months, until you see me where I am now. Mostly at home or hobbling around on a fucking walking stick. You guys have been part of this journey since the middle of March and I can honestly say I’m nowhere near the same person physically I was even then. I’m v aware I’ve gone downhill pretty rapidly but there is always, always a bottom in the barrel. At some point I’ll hit it, I’ll then plateau and then with any hope I’ll start to improve a bit. I’ll most likely never be cured but I’d take improvement in a heartbeat. It’s pretty normal for M.E. patients to fluctuate between crashes, plateaus and then good spells too. I’m due one of those good spells to be honest; I’ve been different flavours of shit since December 2016 and I need a wee bit of a break. Surely to fuck one of those good spells has my name on it? I guess it depends on how much karma has to say on the matter; I have a feeling I was a bit of a cunt in my previous live(s).
So today is about rest and peace because tomorrow, well tomorrow I have to go to the council and show them why they should let me pay for my blue disability badge. I’ve got to let them watch me try and walk, answer their questions and generally put myself up on a pedastool so they can decide whether I’m fucked enough to park a bit closer to Marks and Spencers doors. The irony being, the parent and child spaces, which I definitely qualify for are right best the special ones at M & S. They know how to treat people do M & S. Classy bastards.
I kind of wish I’d not applied for the badge if I’m honest; it’s the first time I’ve reached out for help and it’s because I need it but fuck me does it gall me, for alllllllllllllllllll the many many reasons I’ve written about before but mostly because I’m a stubborn twat with too much self pride. I’ll go though, and I suspect I’ll have built it up to be more than it is…. you never know… I may get someone who is utterly clued up on the condition. Meh, who the fuck am I kidding? I’ve no hope.
Wish me luck…. I’ll see you on the other side.
Also, before I go… my fucking whirlygig in the garden fell down. Here it is looking sad (we have a replacement spike arriving tomoz, the other one had rotted away). Yes, I know the garden looks alright but LOOK AT MY DEAD FUCKING WHIRLYGIG. Yes I did still hang washing on it. Fucking quitter.
- I’ve written the letter…. we’ll see how it goes down. Most probably like a fart in a spacesuit
- I have a day to myself just to rest. I mean I’ve not rested really, I’ve written but it still feels good to have no agenda. I needed it
- Eli is pissing all over someone else’s floor for a change
- Low lights
- My whirlygig fell down dead earlier. Literally. I was hanging up some of Eli’s previously pissy pants and it just collapsed. The metal spike thingy has rusted and died. So…. I need a new spike… Amazon will sort me out but for now I have pissed up metal object lying on my lawm
- There is going to be so much washing coming back from nursery – I hope none of it is encrusted with shite or I’m burning it rather than washing it. Fuck that.
- Acht this assessment tomorrow is a thorn in my side. I’m really not looking forward to it.
- Our Christiaans been to the dentist and has a poorly sore mouth whether they took an actual saw to him. He came back talking like he’d had a stroke which was inappropriately funny. Comedy Gold.
- What’s on the menu Mellars?
- Breakfast – juicy juicy melon and a yoghurt… oh with half a nectarine that was dying in the bowl. Fruit bowl. Not toilet bowl. No one keeps fruit in their toilet bowl I don’t think?
- Lunch – scrambled egg on a slice of wholemeal with some mushrooms
- Dinner – Risotto I reckon… smoked haddock maybe?
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… a bit of a shit one, granted.