Greetings everyone and welcome to this very very overdue update. My last post was back at the end of February when I had not long returned home from The Christie hospital in Manchester. Following a massive operation I felt sore and pretty ill but I was also really optimistic that my protracted health problems might finally be coming to an end. Sadly things haven’t quite worked out like that and I know I’ve been very quiet online since. Many people have been asking via Twitter, Facebook, email and other means just what’s happening. I hope I can clear that up today. Also, it’s 26 hours to the end of 2016 as I sit down to write this and it seems a good time to reflect on a year most people are quite happy to leave behind.
Picking up the story where we left off back at the start of March, I was recovering well after 12 hours of serious surgery and the prognosis was good. I had been told by the doctors that it should take 10-12 weeks before I would be well enough to work again and begin getting my life back on track. Not having much experience of surgery and it’s effects before this it seemed a reasonable timescale. That meant I should be ready to go back to work some time in May. Turns out that wasn’t as realistic as I hoped. From the end of Feb to the end of April I would say I was feeling better week by week and it just felt like an upward progression. I was able to go for walks and begin to do more normal things again.
Sadly since then it feels that the direction of travel has been gradually downwards into worse and worse health. I returned to work in May as planned and was doing reasonably well on reduced hours but I just kept feeling more and more exhausted all the time. My employers have been fantastically supportive and I really couldn’t ask for more, I would just like to state that very clearly for the record. Unfortunately though in July I developed the symptoms of a serious flu and became quite ill again. I have been unable to work since.
It was at the end of April and during May that I first began to get the stomach pains and swollen feeling that had first landed me on an operating table back in September of 2015. I’ve been back and forth to The Christie for regular CT scans and blood tests though. They seem really happy with the outcome of the operation and say everything looks clear. It seems as though I am currently cancer free. Obviously that’s great news and I’m really happy about it, but why then do I feel as sick? Is it something else? What’s going on? This is a question it seems nobody is able to answer even now.
Since July I have been feeling pretty awful most of the time if I’m honest. I wake up each morning feeling more tired than I did before I went to bed. My muscles don’t seem to work, they ache like crazy and I have cramp despite not doing anything. My joints also fail to work at first and I can only describe the process as feeling like chipping ice off my body before I can begin to physically drag myself out of bed. My chest hurts most of the time as if I have a chest infection. My veins often swell and throb a lot in the arms and legs, visibly so. I thought this was the Lymphatic system probably but after an ultrasound scan the doctor assures me it’s definitely veins. It often feels like someone has wound a rope around my arms or legs and is pulling it. My eyes sting and most of the day it can be a struggle just to get around. The exhaustion is one of the worst things and I can only describe it as having a very heavy cold or perhaps a really bad hangover permanently, with no reason for either. Some days are better than others but sadly most of time I can’t really get out of the house, apart from occasional trips. I’ve been to see many different doctors and so far nobody seems able to explain any of this, despite a ton of blood tests and other investigations. So perhaps this explains my lack of activity online or offline for the last 6 months plus. As you can imagine I don’t often feel up to doing anything much.
I seem to end up constantly waiting for appointments and not really getting anywhere. I waited over 2 months for an “urgent” appointment with an Endocrinologist, when the letter arrived with a date for 8 weeks later it even said “urgent appointment” on it. I hate to think what happens if it’s not urgent I thought. So I finally got to see this guy at the end of October when he basically said he had no answers for me but he would do a blood test and to come back in a few weeks. The next appointment was December 22nd. When I went back to see him he just said he didn’t have any conclusive diagnosis and wanted to discharge me back to the GP. 4 months of my life pretty much wasted. So as you can imagine I’m pretty fed up of hanging around and not being able to do much. I haven’t been able to play my guitar at all really and I haven’t been able to play with the band since September 2015. My employers paid me sick pay and that’s been a real help but sadly that ran out at the beginning of this month. So although I still technically have a job I am on zero pay and have to go through all the regular benefits assessments and processes. Having watched the Ken Loach film “I, Daniel Blake“ in October I now feel a little bit like I’m starring in a sequel, perhaps titled “I, Daniel Lynch”. The paperwork and the amount of assessments and hoops they are making sick people go through just to attain the princely sum of £73 per week are unbelievable. Anybody who thinks people on benefits are living the easy life and free loading in luxury needs to be taught the reality of all this in my opinion. Anyway, I’ll leave it there before I descend into even more of a rant.
I’m actually very lucky to have a supportive family who help with shopping, cleaning and other everyday jobs. So I am far removed from the kind of conditions many people suffer. I’m thankful for that and I am also fortunate to live in a nice place. I just wish I could get back to having something more of a life, being able to go out, being able to work and so on. I’m sure that will happen eventually but right now it feels like it could be a long way off.
Sadly podcasting is still off the table, I don’t know if or when Rathole Radio will return but it’s really nice to know that people miss it. Thank you for your kind messages.
I am now being told by doctors that I have a condition with no medical test or diagnosis and no treatment, which seems akin to me to telling someone they’ve been bitten by a dragon or have an allergy to fairies and that must be causing their medical problems. It’s hardly scientific is it? I was actually told by one doctor to Google the term “medically unexplained symptoms”, don’t bother I can tell you the results. It means you are ill but nobody knows why essentially so tough, get on with it. Brilliant, thanks for that. I may not be a doctor but I do have a pretty scientific brain, I have a degree in Computer Science after all and I like to think I am reasonably intelligent. How people can look at an unsolved mystery and just say “nah, I can’t solve it. Tell you what let’s just chalk it up as unknown and move on hey?” is completely alien to me. Granted I have a large stake in this mystery because it’s my health that’s suffering, but where would human civilization be if our forebears had thought like that? Giving up without even trying. Still living in caves probably having never discovered fire.
So what happens now, where can I go from here? Well I am waiting on a referral (surprise surprise) from the Endocrinologist to a Haematologist to examine my blood. There are certain anomalies in the results with cell counts and other things but to be honest I’m not holding my breath. I still have more scans and tests at The Christie early in the New Year but they seem happy to say their work is done and everything was successful. So I am left considering other options. I have been trying to keep on research and I do feel there’s a solution out there for my condition. Perhaps not a cure but something that can help manage it and enable me to function to a reasonable level again. I suspect a chronic infection is at play and despite most doctors dismissing this, the truth is we just don’t know enough about the area. My immune system is either overreacting to something or I do have an infection and it’s fighting it. Despite all our modern medical advances we hardly know anything about the Lymphatic system and how the immune system really works or why. Let’s not forget that only a short time ago nobody believed stomach ulcers were caused by an infection that could be treated with simple antibiotics. One Australian doctor even had to deliberately infect and then cure himself before anyone would give his theory the time of day. So I am wary of people who dismiss new theories and research as quickly as many of the doctors I have met. I wonder sometimes if they still believe the earth is flat or perhaps the sun revolves around us.
There are some new tests and treatments that I will investigate myself in 2017 but sadly right now it feels like I am in a holding pattern. Unable to do much but sit at home and struggle to stay awake some days.
2016 has been a pretty rubbish year globally in a lot of ways and to be honest I’m in two minds about how to feel. There’s been much to dislike this year but on a personal level I survived a very dangerous operation and came through it without any major disablement. Despite the fact I’m still sick and I have more stuff to contend with, I could very easily have ended up with permanent brain damage and let’s be honest here I could easily have died. It’s not nice to think about but it’s the truth. So all in all it couldn’t have gone any better and I have to feel I haven’t come out of the year too badly personally. The difficult thing is having hoped that all of this was over. This time last year, while I faced difficult times ahead, I actually felt physically better than I do now and I knew there was a plan of action, a treatment for my ills. Now I’m stuck with no answers and no real direction to go in. If anyone out there has some medical knowledge or any of this rings a bell then all reasonable theories will be considered. One thing is for sure, I can’t abide an unsolved mystery and I will get to the bottom of this. I guess it’s just going to take a long time.
I hope this update hasn’t sounded too depressing because I really didn’t want it to be. I am a positive person and I never give up. I hope all of you are doing well and looking forward to the New Year, it’s not far away now.
Let’s hope 2017 is better for us all and I sincerely wish you all the best. I’ll try not to leave it 9 months until my next update I promise.
My Sincerest Best wishes,