So yep I have been in here 32 days today and I most definitely was expecting a period quite a while back… But as 50% of the population at LEAST will appreciate, stress of any kind, change in diet, lack of sleep… Drugs… All can throw the timetable out of the window. Periods are not an exact science. Factor in PCOS (thankfully very mild compared to some!) which makes it a bit waffly anyway and I wasn’t getting in any way concerned about having not started. Well except for the odd day where I added it onto the self-pity list mid-weep, along the lines of “…aaaaaaand I have noooooo eggs left wahhhhhh!” So today I woke up a very dry roasted 100 gabillion degrees (actually 37.1 but the thermometer can sod off) and had that sinking realisation that not only did I feel MEH, but had that horrid gripey back twisting business going on. Usually when I have one that is late it is an absolute belter. The fact I am on 40mg 2x daily of slow release morphine and can still feel the cramping like this is making me suspect I would be in serious trouble this month if I was On The Outside 😀 The fact I can basically flick a finger and request a top up of liquid morphine has been amusing me all day, as I know a LOT of people who would really appreciate that at this time of the month, whereas I am being an absolute priss and trying as much as possible to save it for the dressing changes every 48 hours!!
After a little bit of prevaricating, I was finally coaxed out of my ball of woe with some sugary tea and a jammy roll. Or more specifically to one of the Three Musketeers (my new catchy name for the three male Rheumy Drs) standing over me and jumping immediately into a very vague eye exam involving wiggling fingers about a metre from my face and confirming that yes, I could still actually see and did not have tunnel vision. Ophthalmologist didn’t appear today, so presumably will do tomorrow, as having raised it as a worrying short term change and confirmed that yes it is a very realistic symptom to be showing for cryo as well as other small vessel vasculitis diseases whilst I am having a proper un-immunosuppressed flare, I would quite like it looking into, so I leave here one day with my vision. I have already sacrificed a toe on the altar of Fannying Around, I cannot even begin to impress what vision loss would do to me. Today was dressing change day so one of the nurses had already lobbed some oramorph at me and then the news came through that I was requested down in the lab for a cryo test!!! This is the condition I was told I have back in June, that matches all of my symptoms and is the one I came in to start treatment of with rituximab (a.k.a. weetabix). I do appreciate the speed this got organised in the short term sense, given I spoke to my Dr last night, but I have also spent two weeks being a little bewildered (vocally…) as to why it wasn’t done as soon as the new protocol were set in place that invalidated the last sample taken about three weeks. Feelings therefore summed up as ‘about fecking time’. So, very steadily on the way to floaty, I got wheeled down to the Blood Caves – any time I get to travel further than 100m under my own very slow limpy steam, it is very exciting and something about someone pushing you down a long corridor in a wheelchair is also quite fun. She did stick to speed limits, but as I was by that point at full pelt verbal-diarrhoea we had a fun (for me) adventure anyway, as I was enjoying witnessing from a distance my mouth totally disassociating from my brain haha! This was even more fun in the Blood Caves as I was telling the lovely Blood Suckers very very carefully HOW important this blood test was, that they needed to keep it at exactly 37 degrees and impressing on them the serious nature of it by confirming that it was the determining factor as to whether or not I had rituximab or cyclophosphamide – simplistic but not entirely untrue! This was reinforced with me waving my blood sample goodbye calling it ‘my future babies’ 😀
So… As far as I know, ‘my future babies’ are now being sent to Preston to undergo a bizarre week of cool, heat, spin, repeat… Or some such order… Also, I think given the new test protocol, it should be much more obvious if the test or the sample is invalid rather than a negative result being a bit of a possible false result. I got wheeled back up, still very much chattering my head off and then got deposited back on my bed for a dressing change. The oramorph and the distracted talking were thankfully still at full pelt and it wasn’t as horrendous as it could have been. The fact that the nerves must in large part have decided who is going to die by now, means that the actual dressing change itself is so much less painful anyway than it was when my toe was variously inflamed, infected to the eyeballs and skinned alive… But it is still pretty shitting sore, particularly for about 30 mins or so immediately afterwards when Death Toe starts to bond with his new clothes. Yesterday I had discussed with my Dr the fact that Friday’s swab had come back showing nothing, but that we were getting more recent blood tests and a swab taken today to confirm whether or not it is still infected. In terms of appearance it hasn’t changed in the last 48 hours to the point I didn’t even bother with a photoshoot!!! Also – I was so grateful for this – no smell 😀 This made it a nicer experience and may well hasten me getting some treatment, but also sadly means that a rush full amputation job isn’t as likely 😦 Stupid mixed blessings. JUST CHOP THE LITTLE SHIT OFF!!! So I did the usual half hour post-dressing change weeping and writhing and then settled back down to hating being a girl and griping for different reasons…
Today’s wonderful thing was Mum coming down from Scotland, doing a fly-by to talk to the fish and grab me some hippie-tastic dresses to add to the variously inappropriate summery attire I have been displaying when NOT in checked slobby pjs… Putting clothes on and having a shower really helps lift your mood some days 🙂 Momma came with warm hugs, proper good gossip update on both sides and a chance to have a talk about all the crappy unknowns about being in here without it having to be over the phone. One of the hardest things since I started being properly unwell was always the stupid mix of wanting to talk to Mum/family when I was upset, but then feeling guilty for upsetting them because I was upset and they sadly can’t do an awful lot tackle the underlying problem! This is obviously all a bit silly – and it never got to the avoiding topics or contact point, but it isn’t nice when you ring your Mum when you’ve had a crappy day, she is very worried about you anyway, you are absolutely and completely powerless to do anything about any of it on both sides, you start crying and she starts crying… Or at least gets suspiciously croaky in the vocal cord region 😉 One of the more amusing bits about having a chat was being able to rage about Mother Nature – we lived in the same house for enough years we appreciate each other’s particular ‘worst moments’ 😀
So yep. I had the hour this afternoon where I suddenly went from one chocolate orange segment and few smarties a day to ALL OF THE CHOCOLATE and am now sitting doing a bit of pain distracting typing whilst my last bag of Ben Pen for the day finishes slooooooowwwwwwly… and eating ALL OF THE PRINGLES 😀
To finish tonight’s epic, I would like to address two pet peeves. Anyone who is a facebook associate of mine will have realised that I am feeling a touch murderous this evening. I was also feeling murderous last night but I don’t THINK I publicised it… Two days back to back is enough for me to need to share so I don’t hurt anyone. The below basically sums up my entire evening. Please excuse my French, but I cannot stress how long this went on for or how loud this was and how much it was penetrating my desperately ear plugged ears. Recall also if you will the pringle eater from upstairs – clearly this is how to rattle my cage… I’m not normally an angry person 😦 The NHS is breaking me!!!
This has been in conjunction with one of the elder ladies I am sharing a room with having clearly started developing a cold. She is an absolute sweetheart, very polite and has a great sense of humour and all of the nurses and I adored her at first meeting. I am trying so hard to maintain this position. There were already quite a few instances a day of hawking throat spitty noises happening, which frankly makes me want to puke – my brothers DID once made me puke waiting for the school bus by doing so and spitting too near my feet… The little princes… Not sure which one it was now, so blame them both 😉 But yes. This is now happening approximately every…. five minutes if I am lucky. A nurse in the room for less than ten mins exchanged horrified glances with me and suggested that she might have to ask her to stop it… But when you are talking about a very elderly lady with alzhiemers, you can’t simply ask them to stop making hideous gross noises, especially not when they clearly have a physical cause 😦 Hence me directing my anger so viciously towards Bon Bon woman!!! To be honest I might make it clear I fear for her medical health and see if they can crack whatever the cause is on the head so I don’t lose my mind…
The OTHER pet peeve is more of a general one, not at anyone specific and something we are all guilty of – including me, directed to both myself in an attempt to be light-hearted ALL OF THE TIME – when actually, sometimes, I think I need to let myself just think ‘actually, this is pretty bloody shit and you deserve to be scared and furious and angry and hate the entire thing with how insanely unfair and random it feels’ – AND directed to other people as part of how normal conversations take place in our society, even though I should bloody well know better. I am, of course, talking about the expression “at least…”
E.g. [you are in horrible pain, stuck in hospital for nearing five full weeks, may very well not be able to keep your job, are shit scared, your friends and family are shit scared, you are definitely losing at least one toe, you don’t even know what you have, you are currently getting worse instead of better and no one can start treatment yet, you have to view your toe rotting every 48 hours, haven’t been able to walk without a stick anyway for 18 months and for many weeks before admission couldn’t even get a shoe on, are missing many many many small lovely little moments, are about to turn 28 in here and spend 3rd birthday night in a row bawling your eyes out very quietly, had to have a careful mutually acknowledged conversation with your Mother that you may well be in here for CHRISTMAS at this rate….] “but at least you don’t have to go into work/spend any money on food for the last few weeks [have been chuffed about this one myself haha]/don’t have cancer [if someone ever ever ever tries that one on me I will 100% kill them with whatever is to hand, even if it means removing my tiny spoon earrings and gouging out their eyeballs in tiny little scoops to get to their brain]/get to have fun drugs [I shall concede this one to a certain extent, as I doubt I would be allowed near morphine without being this ill… But then wouldn’t want or need it if I wasn’t]/sleep all day [ehhh no?!]/don’t have to do any housework… e.t.c…..”
Frankly, although I will let most people away with a few clangers due to the fact it is difficult to know how to talk to someone who has a chronic illness if you don’t understand it – ‘you don’t get it until you get it’ – I really am starting to see comments like this as the lowest form of ignorance, especially when combined with a total lack of effort to engage or learn before/after making such statements. The only situation where this doesn’t apply is between myself and close friends, where we are using it as a bolstering joking form of being supportive. That may seem like having double standards, but if you have never had a proper discussion with me about it all, hugged me when I am crying and been prepared to simply and contiuously appreciate that it is actually just completely unfair and shit, then you don’t have any right to use the expression “at least..” to me and expect me to look at you with anything other than disdain and contempt. On a good day…
Wow 😮 That was surprisingly therapeutic!!
EDIT: Kicked iv stand literally a minute later. Absolutely shitting typical.WHY DO YOU ALWAYS HIT INTO STUFF WITH THE SORE BIT????? ARGHHHHHHHHHH and one of these days, I’m going to do this and the little BRAT is going to half-sever or smush up and no amount of oramorph in the world is going to save me… I’m scared to take my sock off 😣