I’ve just returned from yet another hospital appointment. In the last six months, I have been to hospital ten times thus far and have had numerous appointments at my GP’s. I also have six more hospital appointments coming up in the next two months. This is great if they could come up with a solution as to what is wrong with me but thus far; all they have done is scare me senseless.
I’ve had periods in my life where I have been very poorly after an infection and I had previously been told by a GP that I had ME and as there is no treatment for that, I just had to live with it and modify my lifestyle. A year past February though, I began to realise I was suffering from other symptoms on top of the crushing fatigue I have felt on several occasions throughout my life so I went back to my GP and asked for some help.
In the past, I have congratulated myself on being able to sustain a full-time job and told myself that if I was unable to do anything else, so be it. I have come to realise that I was doing around 8 hours at work and then coming home and sitting around or napping, telling myself that as long as I could get through work, I had to accept I couldn’t do everything. This means that for several years, I have not pushed myself to socialise or exercise and live a very insular life. Obviously, I do have friends and I have had periods in my life where I feel relatively OK. During these times, I have combined part-time work with a full-time degree plus a social life. I have been a party animal during healthier times, living life to the full but always in the back of my mind, knowing at any moment it could stop.
These periods of fatigue to the point of being unable to get out of bed or where getting dressed feels like climbing Mount Everest are always preceded by an infection of some description. When I was nine, I had the flu but after the initial virus had gone, I ended up being off school for a term. I was 19 when I got the mumps and was seriously ill for about a month. After that, it took me over six months to get back to working full-time. I had glandular fever at the age of 24 after a series of infections. This time, it looks like it may have been kidney stones or a kidney infection that has started it off. That was December 2010 and by February, after another infection, I was unable to get out of bed. Between December and February, I could identify a gradual decrease in my health. Luckily, because I had already approached my GP, I was in the system of being checked for everything as doctors now do not diagnose ME until everything else has been ruled out. My investigations through Infectious Diseases coincided with my decline. Not only do I suffer crushing fatigue, I now have rashes, I feel constantly ill, I have a butterfly rash on my face, I have pains in my chest, I have so much pain in my bones and I pretty much have a headache all of the time. I sleep between 12 and 18 hours a day. That’s a few of the symptoms, not an exhaustive list.
Since February, I have been through numerous tests, scans, x-rays, to different clinics and so forth. In March, I was told by a consultant at Infectious Diseases that they thought I may have a condition called Wegener’s Syndrome. At the time, he was pretty sure that’s what I had, told me all about the possibility of end organ damage and I then researched it myself online and started to panic……
When I saw the same doctor in May, he apologised and said he should have been more tactful. By that point, I’d had CT scans which showed no permanent damage to my organs. I then thought that meant I couldn’t have Wegener’s but I
was told by the consultant that it may just be that the syndrome has not advanced yet. Speaking to Rheumatology a few weeks later, explaining my symptoms, the fact that I have been unable to go to work since February and
what the previous doctor thought I may have, a registrar told me to “go home and see how it progresses and I’ll see you in three months.” Three months! It’s ok for these doctors who are not suffering on a daily basis, it’s not their job under threat, it’s not their life passing them by. And I told the poor man in rheumatology this. It all feels like a massive waste of time.
Today, I visited dermatology. The lady has recommended a lotion and a review
at the beginning of August.
I am sick of waiting in queues at hospitals and speaking to secretaries who huff and puff, roll their eyes, complain and speak to me like dirt. I am sick of hearing everyone in hospitals complain about the cuts. I appreciate they are happening and it is difficult for everybody but NHS staff need to stop hiding behind the cuts and just do their job. I know people who work in the public sector and it is hard on everyone but I do not feel it is acceptable or professional to complain about it to what are essentially your “customers”. We are all under pressure at work and at home, it doesn’t give any of us the right to mistreat people.
I appreciate the NHS are under-funded and under-staffed but I am getting pretty annoyed at the state of affairs. I’ve probably spent over £100 on prescriptions – that “might work” but inevitably don’t – in the last four months. Not to mention the petrol and parking charges. Then there’s the time element. While I’m waiting for some sort of diagnosis, I worry about losing my job, I’m on SSP, I don’t go very far or do very much and when I do I’m bedridden for the following days. I am only twenty-seven. I won’t ever get the chance to be twenty-seven again and I feel like life is passing me by. I know there are people so much worse off than me; I’m reminded of that every time I walk into the hospital but it’s not much consolation. I feel so bitter that I have never abused my body – I’ve never taken drugs and I very rarely drink – but I feel like I am being punished.
I just really wish someone could help me.