Culture

When you are refused adequate pain relief, what do you do? Where do you turn?

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 like 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 effect 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 expect 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 gave 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 had 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 against, 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 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 writing. 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.

By Orkney Fibromyalgia Sufferer

https://linktr.ee/Orkney_Fibromyalgia_Sufferer

4 replies »

  1. Although I don’t suffer from this myself I advertised a riser recliner chair for free and it was picked up by a lady who had Fibromyalgia. I could see how affected she was by this horrible disease. She said she was no longer able to get up unaided and the chair gave her a bit more freedom.

  2. I was 3 when I first noted chronic pain. The parent’s renting of a caravan to ease my rheumatically knees had made things worse – I tripped at the exit!. They wanted us to be in Orkney. But the subsequent WW2 bombing of “Dubses Glasgow” – still happening nearby- was routinely wracking the nerves of my other 4 family members! Leaving Orkney, at 14, suffering rheumatism and heart damage, I’d remember fighting the routines and expending aches (I still get some of them). I’ve had lots of operations! My supporters from the communities – in the Youth Hostel movement, the Scottish Theater, and the community and political causes – can still been able! I has been able to call upon European, American, then New Zealanders friends for assistance. The pains may find it to come to be there – but together, we too can try! If someone doesn’t believe it, they might want to read some of my books, covering the wide range of things (as a librarian!). Meantime, I’ve gotta put a foot up – from the Ranfurly Care Centre, where I now live in Feilding, New Zealand, anticipating another continued pain fringed – and friendly!

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