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.