Pain avoidance is my best tactic. I am constantly trying to trick my brain into thinking that I am not actually in any pain.
Does it work?
Yes and no. It only works for so long and it actually does more damage and leaves me in more pain in the long run.
What choice do I have?
None. When you are refused adequate pain relief as I have for the past 10 years, you are forced to find alternatives at your own expense. Is this right? Is this just?
No
A high percentage of chronic pain patients are left unable to work or earn a living.
So how are we meant to pay for alternative pain relief methods and why is the NHS not providing us with adequate assistance?
Yes, there are some disability benefits available. They are not as easy to get as some might think. It isn’t a case of just filling in a form and being handed over the money. You have to be assessed on your need. The assessments are quite often carried out by people who have no idea what your chronic condition(s) are and how they affect you.
As to why the NHS are not doing enough for chronic pain patients. I don’t know the answer.
Some people I know get prescribed whatever they need to manage their pain whilst myself and others get little help to ease our suffering.
None of us expects to be pain-free. We just want our pain reduced enough so we can have some semblance of a “normal life”
Doctors are too quick to reach for the fit note/sick note and would rather people like us give up working altogether. Why? This is something that I don’t know either. I simply don’t have the answer. In the past 10 years, I have been told by several Doctors to give up working altogether.
So what are the alternatives for people like us who are relegated to the scrap heap?
Life house bound, bed bound? In a wheel chair? Not able to do anything for ourselves.
That is the harsh reality that I am heading towards at warp speed. I have been ill-health retired once and it is not something that I ever wish to go through again. It was the most traumatic experience of my life and I have given birth to two children without pain relief.
The wounds may have healed but the scars are still there. They will always be there as a painful reminder of that traumatic time. Although, I am stronger now because of it. I still can’t talk about it without tears rolling down my face. Recently I had to talk about it, I was asked about it in an interview, it took me completely off guard and I crumbled. I have never felt so let down by people whom I had worked with for over a decade and trusted. It happened in 2016 and the emotional pain has eased but the hurt and the feeling of being let down by the people I trusted the most will always haunt me. Like a ghost.
It was the way it was handled. None of it face to face. I was due back at work after a period of leave. Whilst away on holiday in a wee cottage outside Elgin I received a phone call from a complete stranger working for Atos (external health care agency) I was told that my manager didn’t want me back and I was to be ill health retired, which was against my wishes.
After working for the company for 16 years I expected to be treated better than that. I showed the company and my colleagues every loyalty. It wasn’t returned.
I didn’t receive as much as a text, phone call, email or letter from my manager or the management team, which I was part of and had been for several years.
I am glad to say that I didn’t let the experience change me as a person. It hasn’t affected my ability to trust and form new relationships. It may still sting, it was a bump in the road. A big bump. I have moved on and left it in the past where it belongs. Although it pops up from time to time when asked about my 10 years of living with chronic illness.
So you can understand why I do not want to go through that again. I felt completely useless when I lost my job. I turned to write. I started my blog, Facebook page and social media accounts on Instagram, Twitter and TikTok.
Writing got me through it. Putting my feelings down on paper was a way for me to process everything that I was going through. A cathartic way to express myself and I still write to this day.
What does the future hold for me and people like me?
I don’t know. I have an idea, as time has progressed and my illness has become worse. It’s not what I want. Of course, it isn’t. But what choice do I and so many others have?
Nobody wants this life or asks for it.
Orkney Fibromyalgia Sufferer 