Awareness items Uncategorized

Day 4 HAWMC: Letter to me

Do you remember the day you were diagnosed? Perhaps you were scared, felt alone and surely you had tons of questions. Write a letter to yourself for the day you were diagnosed, knowing all you do now.
I am still me despite my chronic illnesses. Yet, my chronic illnesses have formed the me that I am today through the experience I have learned that are unique to them..jpg

 

Dear Me,

This is the day you are diagnosed with Fibromyalgia. I know you are relieved to finally have a diagnosis. You knew it was likely Fibromyalgia anyway and you have been doing an exceptional job coping with this syndrome after the real rough patch. So bravo!

I have a secret to tell you though. This will not be the only chronic pain condition you will be diagnosed with so this will really strain your coping strategies. Remember to never exceed your limits and pace yourself. I know you think the pain will never stop you from the career you desire, but it will. It will prevent that one and it will prevent the one you choose as a substitute. It will prevent just working. So I suggest thinking of training yourself up on a remote work from home type job. You will discover shortly how right I am about certain job limitations. You will soon learn you cannot work jobs with repetitive lifting, physical labor and shift work. This is but a small taste of what will come when you get more pain.

I know you believe this will just affect you physically and not mentally, emotionally or intellectually. But it will. It affects mood. It affects cognitive abilities. Like concentration, short term memory and long term memory. The more pain the less ‘there’ you are. The ways you found to work around that in university will in fact fail when you are dealing with more pain, so again you must not exceed your limits. It is all about moderation. No multi-tasking. Sticking to routines. Pain affects everything so you will have to accept you are going to have to live your life differently.

I know that specialist said you were to young for medication and offered absolutely nothing for you. That is called stigma. You will encounter it a lot. But you have to learn to be your own advocate. I want you to demand to see another specialist and get pain management. The sort that gets you physio and the tools to deal with the pain levels you are soon going to experience. And you need physio and proper exercise because you have EDS as well, which also isn’t being managed. And you have undiagnosed migraines which will become out of control. You need management and the sooner the better. Problem is you have to demand it. Because you won’t get it until things are quite severe. Pain is not well understood by doctors or even treated very well. This is something I cannot stress enough.

The fact is, it is going to get much worse. And the depression you just got over will return with a force you have never experienced before, due to the fact the pain will be significantly more severe. I know you loath psychologists and find them condescending but you will need one. You will need medication as well. Not, by the way, antidepressants which make you suicidal. It is vital to manage your mood with the pain.

If you exceed your limits and try to work full time when you cannot you will hit survival mode levels of pain. Where you just get through the moment to survive. Where you have absolutely no life. Where it is just an existence. And you will be suicidal because that is no way to live. You must listen to your body and understand that limitations are there for a reason. You can’t push through the pain. You can’t exceed those limits all the time. You will suffer for it in ways you cannot, yet, imagine. You know your limits. You know moderation and pacing. Just do not forget those lessons. You will want to hold onto a career but it isn’t worth your life, literally.

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