Critical Care

After more than a decade of having challenges with several autoimmune diseases and other related struggles I have found that I am less and less inclined to seek medical assistance than I ever was before. I am now at the point where I have told my husband that unless I am on my last breath I will prefer to stay at home and ride it out. Sounds strange to some of you but to others in a similar place as me it will sound perfectly understandable.

After a decade of running back and forth to doctors, taking tests, taking meds, struggling with pain and still having my abilities diminish further and further I have decided that the one thing I can have control of is how often I put myself through the pain and exhaustion of medical intervention.

I simply choose not to!

I have always been silent about this as though I must be doing something wrong by choosing not to constantly throw myself at the feet of the medical profession because people may judge me as being bad for not jumping through endless hoops when nothing the medical profession has provided has been able to restore me to my former health or even stop my body from worsening over the years.

However people like to judge those with chronic health and love blaming them for everything ie. If we go to all the doctors and take all their meds than we are hypochondriacs but if we choose to get off the roundabout then we are bad patients and don’t want to try and get better!

I choose to do what works for me

Today I rarely go to doctors at all and will only go under the most extreme circumstances. That means I spend most of my days struggling, agonizing and pushing myself to cling to whatever quality of life I can have. I am sure that there are many more like me than we like to admit.

As flares occur I have learned to just wait them out on my own, no matter how long they take, even if that means years. I have learned how to administer prednisone bursts for myself and manage my pain as best I can. I take the meds that have proven useful and all the current autoimmune DMADS, and I will occasionally give bloods to the pathology labs to ensure that my meds have not become more toxic and that I am not missing anything obvious. And that is about it…

I have kept in touch with several fellow autoimmune fighters in similar positions who have decided to take the same approach and for very similar reasons. Their secondary progressive MS means that there is no real treatment options available and they must also treat their diseases symptomatically. Therefore they too ride out the ups and downs and they also only go to A&E when things are desperately bad.

Over the years I have encountered so many different challenges including optic neuritis where I lost my vision and yet I waited it out at home. I have suffered through several boughts of colitis and taken antibiotics and prednisone for myself until the symptoms abated. Many other IBD sufferers also keep these drugs on hand with them and must manage symptoms and flares for themselves too.

I regularly lose movement in my limbs, suffered vertigo that sends me crashing to the floor and trigeminal Neuralgia that is like electric shocks through my face and is blindingly painful (to name but a few things). As sufferers we learn that what doesn’t kill us means we learn somehow to cope, alone and at home. Somehow. If we went to hospital every time we were in desperate pain or struggling to move we would be there more than we would ever be at home.

I have learned to manage a lot by myself and my husband has had to be nurse, carer, companion and psychotherapist all in one. These are just a few of the skills we have to learn as sufferers along with many many more.

We do our own physiotherapy, our own stretching, our own research and work hard on pushing ourselves to stay as mobile and as able as we can possibly be and that’s what we do every day, with or without doctors or support.

In the past decade we have never asked for help, assistance or money from any of our friends or family but we have offered it many many times, even when we couldn’t afford it. Many sufferers are placed in similar circumstances due to the way in which they are judged or treated should they ever ask for assistance, we can become even more ostracized, so we learn how to continuously suffer on in silence.

It is for these reasons my husband and I are in a very special position to be able to say that we (like many other sufferers) may have struggled terribly and may have fallen many times, we may also have made mistakes along the way but we keep providing the best care to each other that we can, and so far there are few other places that can match this level of care; even in hospital.

I write this in praise of all those out there who are struggling and yet still caring for themselves as best as you can every day. It is a travesty that your efforts don’t warrant the type of understanding and recognition that you deserve but for as long as I can I will always be trying to shed some light on such people and all they go through because you are all amazing and have much to be proud of.

If only all care was as deep and amazing as the care we must provide ourselves through the hardest battles that there are in life.

Gentle hugs,

Trish.

3 thoughts on “Critical Care

  1. Trish, this post spoke volumes to me. I have been going to mds for years and years to the point it has literally given me ptsd………..I also am at home, in pain and just can’t get myself to another md appt. where i will be given drugs that will not work or make me feel worse, if that is possible. Our “healthcare” system is really a sick care system………I am deeply sorry for all you endure Trish………thank you for your wonderful blog that makes points that my brain is unable to express.

    Liked by 1 person

  2. As a young man I checked out of medicine for about 9 years. But I knew that at some point i had to go back or I woudl not last long. Once I did reengage i was able to do it on my terms. Despite some ups and downs I have had a good relationship (for the most part).

    I do understand how this works best for now. I also hope the medical community will come around to be caring.

    Like

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