From time to time, I am asked, in my capacity as a chronically ill person, how things are going.

With this in mind I though I would write a brief[0] update as to the state of my health. This is in part to answer the basic question, but also to elucidate more thoroughly on the general “good days, bad days” or similar answer that I give when there isn’t the time to give a full explanation without turning the conversation into “Me me me me me me!” [1]

So there are two basic things wrong:Firstly I suffer from sarcoidosisSecondly and apparently unrelatedly, chronic pain.

So, chronic fatigue. This is probably caused by my sarcoidosis, a wierd disease which seems to have whole body effects, even though it seems to pick on particular organs for physical symptoms. Being in regular extreme pain and on strong meds doesn’t help either. I am always tired, a constant state of exhaustion which is never ending and ever present. I suffer from insomnia which keeps me awake and I then my body will go into shutdown for 12-20 hour stints. Even when I don’t have to attend work, no amount of sleep is ever EVER enough. I have basically no energy for any activities other than those which occur in a chair. You would be amazed at how old playing computer games can become, even for me.[2] Getting out of the house for anything outside the absolutely necessary is really hard work. I’ve not seen my sister in forever, because the thought of travelling the 200 odd miles fills me with fear. Speaking of which…

I suffer from anxiety. This is again, very probably caused by my sarcoidosis. This means that I am prone to worry over things which don’t deserve the attention. If I have little or nothing to worry about, my brain will invent things which have no basis in fact or logic.

Though on a logical level I know this is happening, I am unable to control it and my mind churns around and around imagining the worst possible outcomes to all possibilities. I am receiving medication for this which helps somewhat, but there are times when it can be paralysing and all consuming. As you might imagine, laying in bed with my brain running through conversations which will never happen, in which whoever I am speaking to (friends, colleagues, total strangers) is being wholly and completely at odds with my and utterly unreasonable contributes greatly to keeping me awake at night. This does not help with my fatigue problems.

My anxiety is what tells me that none of you would understand my problems and how you all think I am a terrible person. It tells me that no matter how I would try to explain or justify myself, it would all fall upon deaf ears. I know you all talk about me behind my back in condescending tones. When I do try to open up, I will be confronted with continuous negativity.[3]

I rather feel I could cope a lot better with everything, if I didn’t have the anxiety telling me everything will not (in fact never ever) be all right, everything will always be the worst it could be and if I were to try and make anything better I would not only spectacularly fail, but make things a whole lot worse. It’s interesting that I’ve written more about anxiety than any of my other (arguably just as bad) problems, but you see – my anxiety says I have to justify it at length or it will, quite understandably, be completely dismissed.

I am always in pain. Despite every scan known to the radiographer’s department (I asked them and they said I’d had them all) no root or at least treatable cause for my pain has been located. I’ve had physio, including accupuncture and have been seen by the local specialist pain consultant. The only solution which is in any way effective is opiate based drug therapies. I am presently taking tramadol, about twice as strong as codeine[4]. Needless to say, having been on this for so long I am now dependant[5][6] upon it, both as pain relief and also I suffer from withdrawal if I skip my regular dose. Naturally I also go through paracetomol and ibuprofen like smarties.

Taking such strong drugs, along with ones for blood pressure, anti-anxiety and other relaxation or sleeping pills as necessary to combat the insomnia contributes both to my general state of unwellbeing and tends to make me a bit muddle headed. I can assure you that whilst a few opiate painkillers from time to time might be amusingly recreational[7], being on them long term is horrible and one just wants to come down and be able to think straight. Naturally they don’t mix well with booze at all, so I rarely drink these days[8].

It had seemed for a while at the beginning of the year that things had started to improve somewhat. I was less in pain and generally feeling better, healthier. Since August, I’ve crashed spectacularly. I am more tired than ever, I experience nausea for at least some of every day. My pain has ramped up. Basically I now constantly feel ill, on a really good day, I’ll just feel a bit under the weather. On a really bad day means walking up the stairs makes me feel faint and I’ll probably be vomiting at some point.

I am therefore looking forward with great anticipation to my next round of visits to the hospitals and so on.[9] I’m due to see my sarcoidosis doctor in January. I should have seen him last month, but there was some issue with excessive quantities of patients and so I’ve had to wait. Last time I saw him, my lung functions were down and there was talk of asthma, or progression of my sarcoid or other things.

Meantime I have been trying to get back to see my pain doctor. My GP wrote to his clinic[11] and they wrote back saying they deal with pain, not sarcoidosis. Obviously they lost the letter in which the consultant said he’d be pleased to see me again, also didn’t bother to read the part of the GP referral which said chronic pain. Not happy. I really need a different pain management solution. Tramadol is NOT helping with the other aspects of my health. Not at all.

The net result of my current situation is that I am now forced to take a big step back. I’ve resigned as a director of Alpha Omega Computers and am working part time. With arrangements I’ve made with my colleagues, I’ve got about 10 months of full on financial security, by which time I need to have got something in place to enable me to carry on with life. Either to be well enough to return to full time work, or some other method to support myself on a long term basis.

Naturally I am pretty well unable to ever ask for help, except when in the direst of duress, or when it’s for something trivial. Asking for help will inevitable lead to disappointment as there will be lots of good reasons for not helping me. This applies to my friends (even when I know they love me). It also applies to dealing with banks, benefits and whatever else may confront me on a day to day basis. Because I know I will get the worst possible reaction, it is easier just not to ask.[12]

If you read through all this misery, then well done you and thankyou. You can click ‘like’ if you want, without explaining how it really means ‘not like’. I’ll understand.

Sorry this missive has failed on the amusing gags front. I’m just not in the mood.

tl;dr – Life sucks pretty badly atm.

[0] Even now, having written less than two sentences, I know that in all honesty it will be anything but brief.
[1] I tend to presume that people really don’t want me to bang on for the next 15 minutes about shit and will make a point of asking me for more detail if they want it.
[2] Yes, even for me. I know I am the poster child for overindulgence in video games, but even so.
[3] …I could go on. Whilst I know it’s not true, the anxiety monster isn’t interested in reality.
[4] I’ve written about my codeine fun elsewhere.
[5] My pain consultant reassures me this isn’t the same as addicted, though I think he’s splitting a hair mighty thin.
[6] At least Tramadol doesn’t affect my personality like codeine did. Well.. not as much, I hope.
[7] If you like that sort of thing.
[8] So if you were thinking of buying me a bottle of grog for Xmas, perhaps best to reconsider.[10]
[9] No I’m not.
[10] Unless it’s really expensive grog designed for occasional indulgent sipping… Just saying 😉
[11] I’m not blaming Dr Pike cos his bureaucracy sucks.
[12] Hahah… you will fail and die miserable and alone, just like you deserve.. Big Love, The Anxiety.