Tuesday the 24th July 2018
Right then it’s Tuesday. It’s a shitty point in the week is Tuesday aint it? It’s not quite the beginning of the week anymore; Monday’s already pebble dashed all over your hopes and dreams of a positive week, and it’s nowhere near the end of the week so you can’t quite invest in the freedom of the weekend. Aye, Tuesdays are wank. Now, before you start rolling your eyes and tutting while muttering about it not mattering to me anyway due to my slovenly state, let me slap you back to reality with one phrase; potty training lazy toddler.
It’s been fucking carnage today. He’s spent all morning in last nights jamma top with his bollocks swinging in the breeze in the faint hope that it’ll mean he realises that any piss that comes out of his tiny knob isn’t going to be caught by cloth. It hasn’t. He pissed on the carpet this morning seconds after getting up from his potty, which, by the way, he’s been sat on multiple times this morning. I’m so fucking tired of hearing myself say “Eli, shall we sit on the toilet and try and have a wee wee” that I took direct action and chucked a load of squash in him. In Eli terms it’s a right treat he only gets water 90% of the time but it backfired a bit on me. He drank so much of it that no only did he turn into an absolute beast thanks to whatever shit they put in squash, but he drank so much that he pretty much maxed out his bladder and as a result he struggled to go. He sat on the potty and when the drips starting coming he cried to get up; I’m not sure if it was sore, or uncomfy, or a bit of both but it was an utter sin for him. We got there; he eventually relaxed enough to have a decent piss but it wasn’t a nice experience for him; even with the chocolate buttons reward after after. We’ve had a bit more success this afternoon with a slightly less fraught attempt but he just wont relax into it… I guess I can’t blame him, he’s been used to pissing and shitting in an absorbent arse bag his entire life. This must feel like the equivalent of a Waitrose shopper braving Lidl. Tomorrow should be easier right enough, primarily because he’s at nursery and I won’t have the fear of my belongings or body being pissed on. Oh the joy in that statement. He’ll also see his wee pals going back and forward to the toilet, and will hopefully learn it’s natural and not dirty; I’m hoping we should see some progress by the end of the week. So tomorrow, for the first time in over a week, I won’t be covered in piss; winner. The downside is that I may as well pack his entire wardrobe off to nursery for him; they’re going to need it because he gives you as much notice as a 50 year old virgin before he empties his load and gets back to shoving whatever the fuck he has in his hand, into whatever else he can find. Apparently the nursery don’t mind, I’ve phoned to make sure. They’ve more patience than me is all I’ll say because this sort of shit is what makes my tits itch in parenting; giraffes drop out the womb from a great height and can walk pretty much straight away. Human babies on the other hand are a fucking liability because they’ve been pandered to way too Anyway, this has been my day so far. Yes that monkey in the background does have pants on…. he also has this own potty (see purple potty beside Eli), I’ll do literally anything not to be covered in piss.
So today has been dull, and frustrating and it’s been made worse by the fact I woke at 1am and didn’t manage to get back to sleep until near on 4.30am. The cat woke us at 5 by singing the song of his people, Eli woke at 7 and I cried at 7.05am to Christiaan that I couldn’t get up. He got up and took bollockchops downstairs while I slept until just before 8 when he was starting work. I could kick myself squarely in the flaps for being so brazen about escaping insomnia, a really common symptom within the M.E. community – it’s caught up with me now a few times and it fucking sucks. You’re so so tired and it’s not even like your brain is thinking of other stuff, it just wont close down. I imagine it’s a lot like having a blinking competition with yourself in the mirror. You’ve no chance of winning.
So today I’m normal tired and M.E tired. Normal tired I can deal with standing on my head these days, add M.E. tired to the mix and it’s fucking awful. I could happily crawl into bed and sleep for a bazillion years but we’re not quite at shut down stage just yet so I’m literally dragging myself through the day. I only need to hang on until tomorrow when I can hopefully get some rest and switch off for a bit. I love my time with Eli but fuck me I find it a challenge, especially with all this going on – I am chuffed to the back teeth that he’s in nursery for the rest of the week.
I guess the big news from yesterday, beside Seamus flying the nest (check out the Facebook page for that wee gem) that I missed telling you about because I published early, was that I did quite well at fat club…. look.
I can’t tell you how much of a psychological boost that daft certificate has given me. When I got my diagnosis I was told that losing weight would be really fucking hard from here on in, on account of my sloth like state. With M.E. you can’t just walk off the calories, or do an exercise class or even gentle toning; all of those things have the ability to make you bed bound for hours, days, or weeks depending on where you’re energy levels are. So I can’t exercise. So what? That wasn’t going to stop me because I’m a stubborn cow; it’s why Eli is the way he is. I was determined the weight was coming off and eating is the one thing that I can control just now, so I controlled it. I’ve eaten really well for 99% of the last 14 months and I’m finally getting to the stage where looking in a mirror isn’t as depressing as it used to be. Now don’t get me wrong, I’m no Kate Moss, and nor would I want to be – I am very fucking clearly not built for speed (even when healthy) and still have a good 2 stone to shift but I look alright. I look better for having got some weight off and more importantly; I’ve done it at the most stressful, challenging, frustrating and near on impossible stage of my life. You have no idea how satisfying that is. It’s maybe not even the amount of weight that’s gone actually, it’s the fact that this is one battle I am most definitely winning. FUCK YOU M.E. (not me as in “me and you”, M.E. you dozy tool… my illness.. THE THING THAT IS WRONG, oh for fucks sake… no… I’m not just tired).
It’s especially important for me at the moment because I can now be considered for a different sort of contraceptive pill. I’ve hit the BMI indicator I needed to in order for it to be deemed “safe” and I’ll be going in to see the doc next week just to check my blood pressure etc and make sure my heart won’t blow up. I should have been there last week, but, I forgot. I can’t even describe how much that statement makes me feel uncomfortable. Those that know me well know that I never forget things, ever. I used to have a brain akin to an elephants; I could tell you every lyric to 90% of songs that have been around in my youth, I remembered birthdays of people who have been dead for 800 years, could reel off stories and conversations, word for word and do it all effortlessly. Fast forward to today and I forget the words for every day objects, my sons date of birth, my anniversary, what age I am and now I even struggle to remember basic appointments. I guess that makes me normal to a lot of people but for me, it’s as far removed from normal as I can be. Tiredness dulls every single sense you have and my brain is so knackered that it’s doing the bare minimum to keep going I think.
I remembered my doctors appointment 35 minutes after it should have taken place and ONLY because I was discussing my pill with a friend who also has M.E…… my stomach dropped. It’s not the first time I’d forgotten an appointment at the surgery, it had happened a good few months back too so, it was the second. I had missed the reminder I set on my phone and Christiaan had also forgotten…. I’d failed at all bases. So I called the surgery, not to make another appointment, but to apologise, like I did last time round when I realised what I’d done because I KNOW how fucking frustrating it is for people to waste someones time; and I’m fully aware that it’s a 100 times worse when the time I’ve wasted belongs to a busy doctor. You’d think that was the right thing to do wouldn’t you? Phone and say sorry? I wasn’t expecting sometime to dismiss my mistake, or tell me it was OK that I’d forgotten, but I guess what I didn’t expect was to be made to feel worse than I did already. See I managed to get through to the same receptionist that took my call last time I forgot and who rather helpfully included a note that said “patient says its part of her condition”. I don’t SAY it’s part of my fucking condition, it IS part of my condition but I dismissed it as a harmless misunderstanding and didn’t correct her. I knew when it was her that picked up the phone the convo wasn’t going to go well and it didn’t; she was snippy and insincere and I may as well have shat on her chips. Marvellous… exactly what I needed when I was beating myself up to begin with. She told me I had no chance of an appointment for weeks (lies, I got one next week) and her tone… fuck me, it was as if I was 5. Her parting shot though was the thing that really wound me up “you’ll be receiving a letter”. Now I have no idea why she went to the extra effort of sending me a letter when I was already on the phone apologising, because when it arrived it basically outlined what I was already calling to say sorry for…. Oh and to tell me that if it happened frequently I’d be removed from the surgery’s patient list. So the letter was pointless unless it was a threat; I can only presume it was another stick to hit me with, because I clearly don’t have enough going on as it is. The thing is see, they’re right, it’s horseshit its happened but would they treat someone with amnesia the same way? If the answer is yes, then I absolutely need to highlight it’s an issue because it’s really not fucking helpful when you have no control…. if the answer is no, then I guess I’m being singled out because I “say it’s part of my condition” and they have no clue what that means. Should I ignore it or should I try and educate? No brainer for me, I started this blog in part to raise awareness and that means challenging the perception of people with this illness in every day life. So I’ll be writing a letter to the practise manager this week and contained within my letter will be some literature on M.E. so that they can perhaps be a little more empathetic when they’re deciding how to deal with patients going forward.
I’d set myself a deadline of the end of August to return to work, so they’re not the only ones hoping my memory starts to improve to be fair. Work will be really challenging if it doesn’t, because I have hundreds of people to work with and each have their own back stories, needs and wants. I need to remember and manage as much as I can. I need a fucking miracle to be honest! I do have a wee nugget of hope though, because thanks to fate and an incredible friend being in the right place at the right time my appointment to see the one and only ME Specialist Nurse has finally been agreed! I go on the 8th of August to see if there’s anything at all I can be doing to help myself, or my situation. I’ve said before that I know there’s no cure, so I’m not waltzing in asking for life to turn around but I also am v aware that my health isn’t getting any better; it’s time to try and mould what life I can have around this illness rather than putting the brakes on and seeing if it improves of it’s own accord. I’ve had enough fucking around now, resting is making no difference…. I need to see what I’m capable of – I need to get back to work.
I’m not sure why it’s SO urgent for me to get back, but since the day I went off, I was determined I wouldn’t one of the 90% with M.E. who can’t work. I was going to be in that 10% of people Trying to Do It All (hence the blog name!). Don’t get me wrong, financially I need to get back too; my salary will drop a bit in a few months time but I could do what many others are forced to do and rely on benefits. I guess could rest on my laurels and accept my fate of being out of work for the long haul but I’m 100% sure that’s not a choice the majority want to make and I’m no different. I want to be out there earning my money and achieving something, so I’m going to give it a bash and I’ve just got to hope that my best efforts are good enough. I don’t want to get the heave ho for being a bit liability though, I need to prove my worth…. I may need to pull a unicorn out of my arse for that one right enough.
I guess I could always turn my hand to writing professionally if I do… fuck… can you imagine having to PAY for my drivel? The world would have officially have gone mad. Let’s hope it doesn’t come to that because I’m not sure we could live off 4p a week.
Right, I’m out of here, I need to switch off and try and become less wound up about the amount of urine there is around my house. Kids are dirty bastards.
- My appointment for the ME specialist nurse is here hooorayyy!!! I need to travel to St Andrews which is about an hour away so I’m hoping Christiaan can get some time off to take me, if not, I may need to beg a favour elsewhere.
- 4 stone gone… I’m chuffed to bits to be honest and I may finally be able to see my fanny when I look down some time soon.
- Despite it being traumatic we did manage to get some piss in the potty and it’s officially someone else’s problem for the next 3 days. Someone who’s less invested in him being idle than I am
- Today is the last day of solo parenting for the week and the beginning of some rest for me for the rest of the week – I desperately need it, I’m fraying at the edges in a bad way
- Low lights
- I’ve not been out of Chez Mellars bar driving to the train station yesterday to drop off the in laws. I suspect Eli is as bored of my company as I am of his… I feel like I want to run my face down a cheese grater
- I need to pack up Eli’s entire wardrobe tomorrow for nursery because I just know he’s going to piss all over the place. I hope he doesn’t piss on his friends mind, that sort of shit ruins friendships
- I have my assessment for my blue badge on Thursday and the more I think of it the angrier I get. The humiliation of proving your physical inability to be “normal” is not something anyone should have to tolerate in return for a some cardboard that lets you park a bit closer to M & S.
- I’m dragging myself through today but I know tomorrow is going to be pretty horrific…. I just hope I can stay out of bed for the day. I’ll be lucky I think.
- I think I’ve permanently stained the living room carpet by throwing salsa on it last night. I was so tired I kicked it off the table by mistake and it went everywhere…. The majority has come out but it does look like I’ve potentially murdered someone when you look closely. When my arms recover from last nights scrubbing session I’ll have another go.
- What’s on the menu Mellars?
- Breakfast – Raspberries, yoghurt and wee bit of granola
- Lunch – juicy juicy melon and another yoghurt because that’s what I fancied
- Dinner – Jacket potato with chilli (left over from last nights nachos) and salad
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… a bit of a shit one, granted.