Paying the price for previous impatience

I’ve never had a ‘Fever Blister’ before: a sore in your nose. They’re related to Coldsores and Herpes Simplex etc. etc. This is a sign of how very ‘run down’ I am. From Saturday night until today, I had no voice, and a lot of ‘Green Gilberts’* – luminous green mucus. Oh, and Fevers with weird visual disturbances.  My Dad has wanted to take me to the GP – which means he’s worried. But I have to explain – there’s nothing the GP can do. I just have to fight it. It’s not an Anti-Biotic thing. Theoretically. This isn’t exactly true – every year I’ve had this (which is every year since 1989 excluding 2002 and 2015) I’ve had anti-biotics because I’ve had a severe pus creating infection in my throat. But not this year. Since 2012 I’ve been allergic to Penicillin. Now, if I need Anti-Biotics I have to take Erythromycin, which makes me feel really sick. It takes longer and wrecks my digestion. I’m not going to take that stuff just for a shitty throat and a lot of phlegm. I’m just going to have to be sick and get through it. So far it’s only been 3 days in bed with sweats. But it’s annoying my Dad.

I’m coughing. I’m hunched. I’m visually mimicking my Mum when she got sick. So my Dad is finding it difficult. I’m not finding it thrilling: I missed the last class of calligraphy, I’ll more than likely miss the last lecture in a series I’ve been attending. I smell terrible (too weak to wash), my hair could be used to source cooking oil and I’m sleeping a lot. Properly sleeping. Nodding at the computer. But I’ve finally eaten. Fried potatoes and bacon. And a sticky toffee pudding and cream.

My Name is Sarah Bowerman and I have a Sticky Toffee Pudding Problem.

Oh, the title refers to my taking many, many anti-biotics in the past in a bid to get better quicker. Now I’m taking it slow without them. I’ve got a crappy immune system – when I get hit by a bug, I drop. I might stop having a temperature by the end of the week, but I’ll be dragging my ass around until the end of December. However, it’s got to be. And it can be quite fun seeing things like this: louis-wain.jpg

A Louis Wain psychedelic cat. Wain was amazing and lived in an asylum.

And also the fevers reduce the pain in my body. I don’t know why, never have: I know I’m getting better when I start to hurt again.

*’Green Gilberts and Black Ernies’ – the family name for types of snot.

More about Louis Wain: https://en.wikipedia.org/wiki/Louis_Wain – exhibition of his work currently on show just outside of London: http://museumofthemind.org.uk/gallery/artist/louis-william-wain

That sinking feeling…

Tonsillitis. Every year, bar one* I get this. I develop big pus filled blobs on my tonsils and throat and I feel utterly terrible. Now, I’ve been sick quite a lot. The worst pain I’ve ever had was Pancreatitis, which was also the most scary illness because the bouts of chest crushing pain came on without warning – the first on a tube train where I ended up in the foetal position on the platform of Notting Hill Gate Station being tended by an amazing member of TFL Staff and a Polish Doctor passenger who just so happened to have his passport to prove he was a Doctor (TFL staff cannot allow anyone without ID to tend to someone on their watch – hence my joy at the Passport). I get regular migraines, have chronic spinal pain, pop-up sciatica… you know. But the Tonsillitis is one thing I dread. I hate the conventional elements of illness – temperature, stuffy head, that sinking feeling, sore, swollen sinuses, and with Tonsillitis, the throat and neck pain. My 1989 bout developed into Quinsy** which was bollox and turned me from a Soprano to a Tenor (shit ye not).

I woke today with the throat ache, and all day the Tonsil bastard has been developing. Currently my head hurts, my eyes are sticky and my tongue is getting stuck when I swallow. I’m sure my breath reeks and I’ll have some delightful Tonsiliths in the next days. This is going to be with me for 10 days, and against current NHS advice, I will have to go to my GP because my immune system is shit and I’ll have to get Erythromycin (because my last bout of Pancreatitis made me allergic to Penicillin). Also it’s the one illness I refuse to be stuck with. I am a giant baby when it comes to this. I don’t want the fever, sweats, weightloss etc. that come with it. I don’t want the sore throat, ears and eyes.

All Hail the Giant Baby.

* 1989

**http://www.nhs.uk/conditions/Quinsy/Pages/Introduction.aspx

Not enjoying

For the first time since University (over a decade ago) I am not enjoying an educational programme I’ve signed up for. It’s not the tutor’s fault. It’s not my fault. It’s my body’s fault. My Calligraphy course is very far away, the room is not comfortable, and after the stress of this year, my joints are not in good shape. The recent cold snap has made my elbows swell. I did a Hulk on a shirt the other day trying to get it off. Swollen, sore elbows are not conducive to Calligraphy. My right shoulder is beginning to join in the Pain Party. I had terrible trouble with my right arm and shoulder at Uni, and then at work. It’s taken a long time and much Physio for me to get the fucker to work and not cause me the kind of pain that means you can’t sleep. So while I’m learning a great deal at my course, I’m not enjoying it. I can’t do the homework, and can’t keep up with the work. I’m very glad it is not an assessed course, that there are no exams, and that it ends soon.

I don’t forget that I have stupid joints, I don’t forget pain. But I had forgotten how much it can Fuck Shit Up. Sitting on the side of the bed contemplating some Round Hand practice, I wondered why my stomach dropped and I felt dread. I had to do a mental ‘body scan’, and also a ‘mood scan’ to find out. It was because I felt exhausted and my back/shoulder felt heavy, sending a jolt of ache up to my brain as I moved. Urrrrggggh. It’s so boring, so very boring. And also it threw me back to University. I learned a great deal while there, but I fucking hated it. I could not take advantage of all the opportunities because of my shit genetics. I had to work harder than other people at base level anyway, for reasons that are not important, but when my body started to fail, this made things unbearable. Recalling those times draws tears to my eyes – 13 years later. Garrrgh.

However, there are bright things. Stupid, but bright. I have learned to roast vegetables. I’ve washed and ironed enough clothes. I found the new socks I thought I’d lost. Between us Dad and I filled a skip with crap from the house. I may have finally found the right curtain fabric for the Living Room.

I can’t do the Round Hand, I suck at the Gothic, but I have Beef Dripping and I know how to use it.

Very Important for those with Chronic, ‘Invisible’ Illness: Abuse – The Ones Who Get Away With It. — broken down body

If my boyfriend did something that caused me excruciating pain – like stab me – and did nothing to help me, would that be abuse? If he gave me medicine that he knew would make me very ill, would that not be abuse too? What if, after he stabbed me, he left me alone in […]

via Abuse – The Ones Who Get Away With It. — broken down body

Save

Hot Water Bottle Wattle?

Ah! Where to begin? Do I give you the good news, or do I bimble around and then thwap it at the bottom? Perhaps I’ll just weave it in.

Fuck it, it’s too cold here (London) to fuck about. I got my ESA confirmed by letter today. They’ve put me in the Support Group – which is very unexpected. I’ve got a cold/migraine/something going on, so I’ve been in bed for 2 days with 4 duvets and a hot water bottle. I missed my lecture last week and my calligraphy class today and I’ve just shat through the eye of a needle. I feel terrible, though relieved. I’ve got a Pain Management appointment tomorrow and to be honest I just want to sleep. I’m going to take some Immodium, make a cup of tea, put some Vicks Vaporub on my forehead and go back to bed.

I’ll write more of the implications of getting my ESA when it doesn’t feel like my head is bursting with the Marshmallow Of Pain.

Oh, I can recommend seeing the very bad/good 1994 film ‘Funny Man’ with Christopher Lee: it’s terrible and good at the same time. If you need to veg, it’s a good veg movie. The budget was £50,000: http://www.imdb.com/title/tt0109858/

 

 

Tick Fucking Tock

Guess what? I had to get another Fit-Note! Yes, after being told that my ESA was confirmed and that all that was wanting was for The Decision Maker to decide which group I was in. I have been waiting for this to be confirmed by letter. Then, last Thursday, I got the regular ‘Your Fit-Note is running out…’ letter. As always, it arrives 1 day before the weekend, 3 or 4 days after it’s sent, and with only 2 days for me to get a new Fit-Note. I expected the letter, but I was really, really hoping that it would not come. I hate getting Fit-Notes because my GP has been a very old man for the last 6 months, an old man who has difficulty using his printer.

In addition to getting the Fit-Note letter, and NOT getting the ESA confirmation letter, I also got a new drug in my monthly prescription. It’s an Anti-Psychotic organised by my Mental Health Nurse (MHN) and my old Psychiatrist. With the agreement of my MHN, I decided not to take the pills until after my WCA, even though they were prescribed in September. But they turned up in my medications bag without any advice on how to take them. So on Monday morning I went to my GP to a) get a Fit-Note and b) get advice on how to take the pills. In addition to a) and b) I also got c) a talking-to by the Practice Manager. I had asked my GP for a supporting letter for my ESA claim. I actually wrote the letter myself and delivered it to the Surgery to be turned into Doctorese. It was going to cost me £45. This was all arranged and I was going to get my letter after my WCA in order to support any appeal etc. I might need to make. But my WCA has been put off 4 times so the Surgery have got antsy. The Manager gave me a talking-to about how it would be better to have the letter before an appeal, about how that is what is best, even though that is not what I’ve been advised and when I first mentioned a letter to him some months ago, he seemed to have no f*cking idea of what I was speaking. Now, considering how many times I’ve asked him for help, and how he was ignorant about WCA/ESA etc. a mere 2 months ago, I found this a little irksome. The Practice Manager has always been an arse to me. Indeed, Doctors in general have been arseholes to me, and have treated me as either an idiot or a child. It does not sit well with me. So, after the Manager had his chat, I saw the GP. Lucky for me, and the Surgery, it was not the Old Man Who Can’t Use The Printer. It was a bright, young, female locum. Now, I am positive towards young Doctors – they’ve not been too shit to me in the past. Indeed, all my progress in getting my ears sorted, my mental health addressed, physio and pain management organised this year is due to a Young Female Doctor.

Monday’s Young GP was gentle and as helpful as she could be. She wrote the Fit-Note without a qualm, checked the new meds against the old (for reactions) but could not tell how to take them. She went through all the letters on screen (I could see) and there was nothing there from the Psych. She had a note about the meds being added to my Prescription, but no directions for use. She told me to talk to the head of the practice. I decided that since I was seeing my Mental Health Nurse today (Wednesday) I would wait to see her before approaching the Head Honcho GP –  who I don’t rate.

Pharma Christmas came early:

14724524_10211048567230837_294855178373692949_n

So, what happened?

Monday: after getting the Fit-Note (ending in January) I photocopied it and sent it to the DWP. Today I saw my MHN who advised me how to take my new pills, warning me that they might make me (even more) sleepy. 10 days of 50mg and then up to 100mg. In addition to my 40mg of Citalopram, my Diazepam, Amitriptyline and Propanolol etc. Walking Pharmacy, me. Then, as I left my appointment I got a text from the DWP. They had received my Fit-Note, my ESA would be continued and I would not need to send them any more Fit-Notes. Huh? What does this actually mean? Have I been awarded the full ESA? What is going on?

Who the Fuck Knows.

In addition to my MHN appointment I also visited my local Church to put in the November Dead List – Catholics use November to remember their dead – you list them and their names are read out in Mass. I’ve had a ‘dodgy’ stomach for a few days. Not pooing, just cramps and feeling sick/ dizzy. I seizured on Monday morning and felt groggy all that day and Tuesday. Today I’ve felt icky in my stomach with lots of cramping. Tonight I’ll be taking the new pill before going to bed. I’ve not mentioned its name before, so here we go: Quetiapine.