I have noticed a growing number of chronically ill / Autoimmune sufferers and I share something in common as the years stretch on, and we have been battling for many years. The similarity is this … we slowly just stop going to doctors and specialists.
Now I am not going to tell people to follow in my footsteps or even to suggest that this is what you should do. This is not medical advise. I am simply being honest about what is happening to me and that’s what my readers have come to expect.
In my time I have gone to all the various specialists, taken most of the available treatments, done all the scans and tests and I am still not cured and still growing progressively worse. So I have decided to manage myself. I believe I would be no worse off.
I felt a growing frustration and futility when it came to the medical profession and my health so it seemed like I was no worse off by simply trying to manage on my own, so I have been.
I still take my meds and do all I can for myself (diet, exercise, mental health) and try as hard as I can to ignore what is happening to me physically.
I find it easier to do this if I am on my own and not around doctors and others. When I am around these people the differences between my abilities and pain levels is glaringly obvious. On my own, however, I am simply normal within my own frame of reference.
This year I started house renovations to distract myself from my day to day routine and struggle and to make my home more accessible. It has been wonderfully creative and very challenging but it has also been incredibly taxing. Next year I will attempt to find a new distraction. And so on and so forth for as long as I can.
I no longer see any real benefit from going to regular specialist appointments and taking the same tests over and over to see how much progression I have, or haven’t, made. The fact is that with each passing year something has worsened and most likely will continue to do so.
The drugs I take will have to see me through the worst pains and the worst times and I hope that they can. They will have to.
I have come to expect regular flares and they have taken longer and longer to recover from. And they still do.
I don’t expect miracles anymore and don’t try every new fad that drifts across the internet.
I have modified my home and have bought various aids and supports as are available for my needs. And I do my best. So does my husband and carer.
I have committed time and effort to try to spread awareness and respect for my fellow fighters and sufferers, and I hope my small contribution will count somehow, perhaps I will never know, but I can say I tried.
I rarely go to online support groups anymore as it is often more beneficial for those who are newly diagnosed and those with many questions that the medical profession just can’t answer or don’t know. I also find it incredibly difficult to stay up to date with so many different groups for each diagnosis and medical problem I have. It can be exhausting on its own. So I don’t push myself and harm myself more.
To many doctors and many online support groups I am what they might call missing in action. And I am completely ok with it.
If I found myself in desperate need of medical attention and close to death then I would take myself to the nearest A&E, but until then I would rather let fate play out as it always will.
I decided I could either spend my time going for my MRIs and regular blood checks or I could spend my time living (as much as I can) and so I chose living.
For many progressive diseases there are currently no medications, so I consider myself no worse off.
At home, in privacy, I can struggle as much as needed. I can fall, rest, shake, ache and cry without fear or hesitation, and I can pick myself up when I am able. No doctor or medication can teach this, so I do it alone.
Friends and loved ones quickly tire of hearing the same stories of struggles, so I don’t even bother telling them anymore. I have one or two trusted friends that I will occasionally share some details with, but for everyone else I stick to listening to their lives and problems.
In a life of difficulty and daily struggle, I have chosen to look for and find pleasure and peace whenever and wherever I can and I will continue to do so. No scan, no test, no doctor and no drug can ever provide that. So for that reason I have become missing in action.
And I don’t regret a moment.