I have found writing this blog a really healthy, therapeutic way to get things off my chest and improve my mental health. One thing about living with a chronic/invisible illness is the catastrophic effects it can have on one's mental health. From past experience this plays a huge part in misdiagnosis though. Waiting lists to see consultants have become so long now that by the time we have lived with these life altering illnesses for 6-12 months with no medical support, yes, the Doctors are seeing us breakdown before them, leading them to think that all our symptoms are due to anxiety and depression when this in fact NOT correct!
Having PoTS means that when I relapse or need support the only person that can help me is my consultant. My GP doesn't have a clue what the condition is nor do they feel confident titrating any medication or feel equipt to support me in any way. I relapsed in July and I don't see my consultant until next week and that is an SOS appt! I completely appreciate I could be in a far worse situation and have to wait longer. But I want to talk about the effects this has had on my physical and mental health and that is just from waiting 3 months, many people (in particular new referrals) are having to wait anywhere between 6-12 months on average.
Today I gave up....
I sat in my lecture and had another 2 hours to go, I told myself, as I do everyday 'you've got this!' I always take one hour at a time if I can make it through each hour I'm happy. But actually putting it into perspective, as a 29 year old woman I don't find this a fair way to live my life! Today is one of those days where I have decided IT IS NOT FAIR! It is not fair that I am so tired from the moment I wake up in the morning until the moment I go to bed that I feel physically sick and I'm struggling to keep my eyes open! It is not fair that when I walk from A to B, on reaching my destination my HR is on average 150BPM and I'm breathless. It is not fair that my husband has to pick up the slack because I feel so unwell. It is not fair that my beautiful girls have to grow up watching mummy battling with her health.
The guilt on top of all this is crippling! I phoned my husband today in tears as I drove home from uni saying I had given up and left mid lecture! His response? 'That's amazing babe!!!' Doesn't that sound like an insane response?! But actually his insight on what happened today is the epitome of true love. He said to me 'you have been poorly since July and today is the first day you have given in and come home. I would say that is a massive positive and actually a huge achievement!' To anyone reading this who have unsupportive partners, this is proof for you that there are people out there that can care and support you. You deserve these people so go and get them, just leave my one alone! 😂 I don't know what I did to deserve a partner that is kinder to me than I am on myself!
On the weekend I went to a seminar ran by Dr Sanjay Gupta and this was precisely one of the things he said we should be doing... being kind to ourselves.I can follow all self care advice... I can take the medication prescribed, I can drink 3 litres of water a day, I can exercise on a recumbent bike but can I be kind to myself and give myself allowances? Absolutely not! I admitted to my husband on the weekend I push to be listened to by health professionals to get the care I need and the medication I need but actually deep down I don't think I actually believe my diagnosis myself! I spend all day everyday beating myself up for being tired... I had a full nights sleep, I have no right to be tired, I have no right to come home and have a nap, Dan doesn't get the pleasure of having a nice lie down and nap at the end of his day and he's had the same amount of sleep as me and been to work like I have been to uni. So why is it fair that I get to sleep and he doesn't? I beat myself up for being tachycardic and breathless when walking.... I must be really unfit because I'm lazy and bone idle?
In fact I have a condition that effects all of the normal responses my body should do unknowingly! I know this, I have the diagnosis and I know my condition like the back of my hand more so than my qualified GP, so why can I not be kind to myself and accept that most days I struggle to get through my day, so if that means I take an hour out of my day to have a rest to be a better, more productive person then that's OK! If only they could apply 'be kind to yourself' to a prescription maybe I could actually do it then?!
If you take anything from this blog I want it to be that when living with a chronic condition it is normal for your mental health to become effected. It's OK to know your limits and accept when you need to rest. It's OK to talk about your mental health, believe me it helps! It is OK to be kind to yourself!
Now don't mind me... I'm off to try and listen to my own advice as I cry into a pillow! 🤦♀️
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