Okay. I am fed up. 

My hip is hurting. One might say it’s the wrong hip, but you know, I just don’t give a shit any more. I have a traditionally bad leg, but right now it’s the other one, with a pain in the hip, running down my leg to the knee.

Doesn’t much matter if I lay on it, or off it, or bent or straight, tonight I am laying in bed having big pain.

Annoyingly there is the possibility that tomorrow might be an important bee day, as we have to move the bees into the hive soon. Let’s hope it happens later in the week, as I don’t want to miss it. 

Off to BRI today to see the Audiologists. They are an interesting bunch. I rather like visiting them. They have their own little area on the far right hand end of the campus (as you look from the main entrance) and it always seems a bit more open and airy than other places. 

I visit them for my tinnitus. For this, they have given me hearing aids. You may think this is odd, as we are trying to control unwanted noise, not add more noise into the problem, but this is entirely the wrong way to think about it and this is why I find them interesting – their explanation of why this works is fascinating.

Once the nerves of the inner ear have noted the vibrations detected by the eardrum a lot happens. Much more than you might think. There isn’t a nice little link to a chunk of brain which directly interprets the sounds. Rather there is a whole chain of internal processing before the final result of analysis is given. Internal equalisers and other effects that work to enhance, clarify and otherwise filter the noise to help in the comprehension of the sounds. This part of the brain also learns and adapts, so that as your hearing changes, due to age or exposure to loud noise (in my case both[1]) or whatever, it can still do the best job possible of interpreting the sounds we hear. In my case, having lost (as is normal as we age) much of the hearing in the higher ranges, the “equaliser” in my brain is stuck with the sliders up to max for those frequencies. As a result, my tinnitus presents as a high pitched hiss, possibly I’m picking up a noise from inside my head, possibly it’s imaginary, but either way that’s what’s happening.

So, the hearing aids I have are tuned specifically to give me a boost in the ranges where my own hearing is deficient. This then has had the effect of retraining my internal equaliser to lower its own boost to those frequencies and so my tinnitus is much improved. It’s still there, but not constantly and less intrusively. I can enjoy moments of complete silence once again.

Last time I went, I had a tinnitus score of 45, this time I scored a 16. Anything less than 17 is considered as not worth treating, in effect, I am “cured”. So I won’t need to visit them again. One less doctor on my list. They will continue to supply spares and batteries for my hearing aids and we did discuss interesting possibilities for headsets with LOOP technology and such, so I might ask to see them again for that, but there’s no need to go back with continued monitoring.

It’s great to be able to say that I’ve got one less “illness” on my list, even though I can’t say it’s cured, I can say the treatment is non-invasive and non-drug and in my book that’s a victory.

[1] Rock on, but give me a comfy chair and a cup of tea afterwards

Here I am, back at LGI. The big change is the lack of notes. Everything is being done with electromagiggery devices and brief notes on clipboards.

I am sitting getting my breath back after being made to blow into the infernal machine. This used to be a device which spat out a graph on a sheet of paper, but is now a tube connected to the electronic gadget into which every other statistic (pulse, height  weight etc) was entered, but the principle of is the same. You blow really hard into the tube, whilst the nurse encourages you to, “Keep blowing, keep blowing, keep blowing..”, well past the point at which you think you are going to die. You then breathe in and immediately almost pass out. Indeed if you aren’t quite dizzy and choking, then you haven’t done it right. Having nearly killed yourself turning your lungs inside out, your reward is to do it all again. And again. Even after typing all this crap, whilst chatting to my kind volunteer “Passepartout of the day” I am still in something of a state.

The NHS website[1] speaks as follows: 
Spirometry is a straightforward test and is generally considered very safe. Some people may feel dizzy, faint, shaky, sick or tired for a short period afterwards.

This is a lie. Most people will feel all of those and for quite a while afterwards.

Today I saw a new Doctor, I forget what his name was, I think there was a Salman involved, but I couldn’t say if it was his forename or surname and I keep thinking Rushdie, which had nothing to do with it at all. He was Dr Paul’s registrar and I’ll make a deal that if I ever see him again I’ll bother to remember and use his name in any missive I may write, but for now, he’s “the registrar”.

So, today I saw the registrar. Usually, I’m not keen on seeing the registrar, as they don’t know shit about my problems, being as they are training to be pulmonary specialists and deal with asthma and copd, whilst I have multisystem sarcoidosis. So usually I insist on seeing either of the two consultants. On this occasion though, caught by a random whim I decided to take a punt and actually he was pretty decent. We discussed the various changes since last time I was there and I was (as happens) able to demonstrate the wonderful technology that enables me to look up my recent blood tests, whilst the actual doctor cannot.
One of my ongoing problems is fatigue, so this time the registrar thought I might do well to have a vitamin D test. I am wary of such tests, as they tend to lead to prescriptions of vitamin D tablets and in sarcoid patients this is often a Bad Idea™ as it can cause hypercalcemia[2]. In fact there are two tests for vitamin D. The standard test is for 25-hydroxy vit D, which in most people is a good indicator. This is activated in the body into 1,25-dihidroxy vit D, which can be metabolised for the stuff you need vit-D for. Sarcoid granuloma can also activate vitamin D, however, so a low count for 25D might simply mean it’s all been converted into 1,25D by the sarcoid, thus both a 25D and 1,25D test are indicated. The trouble is that a 1,25D test is not a normal blood test, requiring the blood be kept cold and rushed to the lab and well, it’s not hard but it’s not standard either. Most GP surgeries couldn’t do it, as they couldn’t get it to the lab quickly enough, assuming the lab even offered the test, which many don’t.
Anyway, to my surprise and pleasure, the registrar described my wariness of a standalone 25D test without an accompanying 1,25D as a valid concern, meaning he is (at least as) knowledgeable (as me). So, the plan is to do the 25D anyway, along with a calcium test and if they come up normal call it good and if they don’t, then work out how to order a 1,25D test because the computer said no. Meantime, if they do come up low, we’re not telling my GP, so he doesn’t freak out and start prescribing calcium pills, which is the usual (and incorrect, for sarc patients) solution. Whilst we were doing bloods I got him to do an HBA1C as my last one was a little high and I want to monitor it. He seemed to be of the opinion that blood sugars wasn’t really their thing to deal with, but I noted that I wanted to monitor it and I was in a hospital, so would he please request the test. On that basis, he was quite happy to do so.

We also agreed to do a sleep study, Not done one in a few years, I had mild sleep apnoea then but it might have got worse and need more active treatment.

Barring anything out of the ordinary happening, back in four months.

[1] https://www.nhs.uk/conditions/spirometry/
[2] Calcium and vitamin D in sarcoidosis: is supplementation safe? 
      Kamphuis LS, Bonte-Mineur F, van Laar JA, van Hagen PM, van Daele PL.

I really ought to write this stuff more. I’m going to try. Three years have passed and I’ve singularly failed to record any of the changes there have been in my body, mind, soul. I’m hardly likely to be able to go back over and see how I’ve improved, or degraded in that time without a sensible record and so very much has happened – well, I mean three years nearly, duh!

I can see that the last time I wrote about it being poison day and being generally displeased with that fact, having an expectation I’d be taking the methotrexate indefinitely and rather morbidly contemplating the possibilities of not taking it (and maybe dying) or taking it and being forever miserably sick.

It’s nice that I can report, that in fact, neither of those things came to pass. My blood counts recovered sufficiently that I was, after all, able to stop taking methotrexate and not die. In fact I have been off the MTX for, well long enough that I’d have to check the records, so I guess more than a year. I’m still taking prednisolone, but at least I don’t have the weekly poison day to get over. People laughably talk about hump day – how little they know.

My mental health isn’t much better. I’ve seen psychiatrists and psychologists and I’m a bit more stable I guess. I’ve been on a new drug regime for a year now, taking duloxetine and though the first couple of weeks adjusting to the new medication was hellish, once the switch clicked (and it was very much like that) I’ve been a lot better. Unfortunately over Christmas I got sick and was unable to meet some appointments, so I am now “between” psychologists. Not sure where I go from here, but as I’m pretty solid at the moment I think I suck it and see.

Last August I had an injection into my sacrimal joint to see if this would help my leg pain. The boys at LGI wanted me to get a second opinion so I duly went to the Leeds pain clinic. Being as I was going there, the Dewsbury clinic had to discharge me, which I quite understand. Trouble is, the Leeds people never followed up on anything, so here I am near on a year later with no pain consultant at all. I’m not happy. I’d like to talk about a way of reducing or eliminating the fentanyl, ideally with the least possible side effects, but I want a proper pain consultant to talk to about it.

So, I’m due to see the sarc doctors on 8th May. I’ve been having a bit of trouble with breathing, like taking a breath and there wasn’t enough air in it, nor the next breath or the next. A couple of nights ago I woke up and the air was like syrup, trying to get it into my lungs a real struggle. Good job they are chest guys and I can moan at them about it. I will also see if they will refer me straight back to Dewsbury, where they were looking after me for pain stuff.

It is Monday. More precisely it is the small hours of Tuesday morning, but for the purposes of my current mental image of time, it is Monday. As with many Mondays, I have spent much of the day sleeping and hiding. This is for two reasons.

1 – I am currently fairly nocturnal.
2 – Monday is poison day.

On Monday I take my weekly dose of methotrexate. I’m far from being unique in that regard and know plenty of other people who also take mtx. All of us experience some amount of side effects, but in my case the side effects are particularly bad. Some 12-24 hours after taking it, I hit a big downward slide in my health so that for the next 24-48 hours I may, or may not, be able to get out of bed. For the next 24-48 hours after that my health starts to improve to the point where I can probably get up but who knows how long for, a couple of hours, more? By the weekend I am starting to feel almost like a normal person, except that I am dreading the return of Monday.

This, coupled with being in pretty much constant pain[1] and in any event fatigue from my disease and from anaemia caused by my disease (yes, I get a double whammy) tends to leads to a level of depression. I have suffered from anxiety for a long time and so being fearful of the future (even if it’s only Monday) is fuel to that fire and it becomes crippling for dealing with big things like finances and social life,  but also even mundane things like grocery shopping.

And right now I am really struggling as I have done from time to time with finding the real motivation to keep fighting this battle.

On the one hand, I can keep taking these drugs. They aren’t a cure. They simply keep the sarcoidosis at bay. There hasn’t been any significant change in my bloodwork since I started on the medication, neither better or worse. I take this to mean it’s working. It’s keeping me alive, albeit with terrible, crippling side effects. It’s not enough that I’m housebound from my chronic leg pain, I also choose to make myself extremely sick each week as a method to keep myself alive.

Because this is what is comes down to: If I allow the disease to progress, there is a meaningful chance (and there are no percentages, guarantees or firm information in such a poorly understood disease) that the end result is total collapse of my bone marrow. Production of red cells, white cells and platelets would fall to the point where my blood would simply no longer work. Blood transfusions might help, but at that point realistically I should be making sure my affairs are in order.

Or to boil it all down: Take poison every week to make myself sick, or maybe die.

I am more than moderately fed up of being sick. I am quite sick enough without taking poison. Recently I went on holiday to the US. I skipped two weeks worth of poison pills so I could be at my most healthy to enjoy it. Even so I was really only well enough to do stuff every other day. Add in the pills and my entire life is “how sick am I today?”. Will I be well enough to get up, shower, shave? Will I be choosing between having the energy to feed myself, or be clean? Which do I need more today? Where shall I spend the few spoons[2] I have?

So I am getting into a long debate with myself concerning quality of life. Is it worth living a life in which I spend most of my time terribly sick from medication and the rest of the time on a 50/50 if I am physically well enough to “do something” and of that time 50/50 if my anxiety issues will allow me to do the thing. It really doesn’t leave a lot of useful time to enjoy life. This in and of itself simply adds to my depression and so I slowly sink lower and lower whilst my anxiety issues, fuelled by my depression and general inability to do things become worse.

It’s not that I want to die, I’m not scared of death, but neither am I in a particular rush. No, it’s just that I don’t want to live like this. Sure, I can turn it off for a week and go gallivanting off to New York and pretend like it all doesn’t exist for a week, but I have to come home afterwards and live it again.

So, it’s Monday and I’ve taken my poison pills again. In a little while I will be very sick again. Over the next few days I will go down, then gradually start to feel better, just in time for the awful terrible realisation that it’s time to poison myself again for another week, another cycle and another battle to find the motivation to continue.

[1] Recap: I have chronic pain in my shoulder and leg, which has nothing to do with the sarcoidosis.
[2] Spoon Theory

Today is the big day of the head MRI. In about 4 hours, I will be enjoying the banging thumps of the magnetic resonance imaging machine as it comes to the conclusion if I am much more ill than I already thought.

In other news my fentanyl patch is itching. Like a bitch.

So the story is now as follows.

I saw my consultant earlier in the week and complained at some length about how awful the methotrexate makes me feel. Finally I pressed him on what would happen if I were to stop taking these meds which make me feel so shit.

He refused to give numbers, or probabilities or whatever, but said that if allowed to progress, my sarcoidosis would cause my white cell count to drop and my red cell count to drop and finally it would likely be fatal. So, take drugs which make me feel like death, or die.

Nobody dies of sarcoidosis for fucks sake. It’s .. well, rarely fatal. I mean some people die of sarcoidosis, but it’s not a disease you start writing your will for. Well, apparently it is. So I should get on that I guess.

How I feel about all this, I have no idea. I really don’t. I know that I feel awful for the family. Losing mum was just awful, I can’t even begin to imagine them picking up the pieces if I was whisked away too.

I am at work.

I don’t want to be. I feel sick and my shoulder hurts – but I can’t afford to lose the wages.

I have to stick out 6 more hours. Telling myself I can manage that, though all I want to do is go home and go to bed.

Metal bashers across the back are playing some horrendous thumpthump music at maximum volume and that is adding to my misery.  Also, I think my fentanyl patch is running on fumes even though it should have another 8-9 hours in it.

Summary, I feel especially shit in almost all possible ways.

All they had to do was organise one injection. How hard is that?

Instead, fuck knows when I will get it, I’m sposed to be seeing my consultant next week – I swear to God he is the only one who actually gets the urgency of my situation. Meanwhile everyone else is fucking plodding along like fuck all matter.

I need this bastard injection to prove (or disprove) the usefulness of steroid treatment for my sarcoid. It’s completely ridiculous. I will now I guess have to rebook my appointment to see consultant and who knows how long it will be to get to see him now? I guess if I speak direct to his secretary I may well get more joy.

Feeling really messed about and poorly done by.