Today I am holding a party for one ~ myself, I’m not ~ as MCR say ~ I’m not o-fucking-kay!
I am allowing myself this day to wallow in self pity and self hatred, to exorcise the demons, to vent my woes and to clear my head in order to sort it out. It’s not pretty! I am tired of seeing my reflection, the version of myself that screams neglect and poor health. I am pasty and doughy, my face reminds me of the Pillsbury Doughboy.
I usually pride myself in being positive and looking for the silver lining in every dark moment. Today I just feel like I’ve had my fill, I am fed up and sick and tired of being sick and tired. It sucks the big one.
My cognitive issues are hugely worrying, I am struggling to find words, construct sentences and follow conversations or anything in fact. I feel frightened for the first time in my life because I can’t control my brain and it’s inability to process information is making me feel frustrated and truly scared that perhaps dementia may be approaching ~ despite being told it’s “just brain fog” ~ it doesn’t feel like that.
Each and every day I am having frequent cold clammy sweats throughout the day ~ they steam up my glasses and make me feel as if I may internally combust. I can’t walk far and have pain constantly.
The podiatrist has noted a number of issues regarding my legs, ankles & hips, which need correcting ~ this week we hope we have both hips at the same height using heel lifters, a single on in my left shoe and a additional block under my right one to lift up my right hip to be inline with my left one. I roll both feet in whilst I walk too and lean to the right, these issues will be addressed once we are sure my hips are equal, when my right leg is lifted to be as long as my left.
I’ve discovered that the medication I’m taking can cause kidney issues among other very scary side effects and that it’s not recommended for folk like me who already have kidney disease, I have chronic kidney disease stage 3 and have annual blood tests to check it ~ so why was I prescribed it?
I’m now in the throes of withdrawal as I slowly wean myself off the medications Gabapentin, Amitriptyline & Codeine, doing it slowly one at a time and titrating down properly. It will take a few months to do safely. Once I am off all my prescription medication I shall be using meditation and mindfulness to cope with the pain, something I am starting already as I experience the many unpleasant withdrawal symptoms. I am also starting, which is a slow process, to learn the parts of the Tai Chi for Arthritis by Dr Paul Lam routine via a DVD I have purchased as per my rheumatologist physiotherapist recommendation ~ I have a referral in place to go through this with a specialist rheumatology physiotherapist who provides 6 weeks of the Tai Chi for Arthritis by Paul Lam classes to ensure patients are doing the positions correctly. Then once I am fully competent will be doing the Tai Chi morning and evening daily forever, as prescribed by my rheumatology physiotherapists.
As for my size, I am a massive 6 stone overweight which puts me in the morbidly obese classification ~ I loathe looking at my body and hide it at all times. I feel uncomfortable in clothes as I am so very aware of the large distended area of my upper stomach, something I have never had in my life before ~ it arrived towards the end of my six months on prednisolone. So thank you steroids! I had hoped once I had stopped the steroids it would go back to how it was before, with just a bit of a jelly belly left over from having the children ~ something I don’t mind. However, the upper abdominal area is still distended and my physiotherapist has told me it will only go with aerobic exercise ~ something she said that I am unfortunately unable to do because of my M.E. ~ ironically both the FMS & HEDS react positively to guided exercise but the M.E. doesn’t ~ which is why I am no longer doing hydrotherapy because it caused terrible PEM.
So I’m pretty stuffed it would seem ~ but I won’t accept that. Instead of meals I’m having Huel shakes and smoothies, real food is reserved for special occasions or date nights. Exercise may be out but I have my physiotherapy hip and ankle exercises to do daily along with learning the Tai Chi for Arthritis routine. I won’t give up on weight loss but I am hugely daunted by the mountain looming over me that I have to climb. I hate seeing the judgement in other peoples eyes when they see me ~ they see a woman who looks as if she’s just let herself go ~ Waynetta slob, all I need is the purple (ironically my favourite colour) tracksuit!
A woman can feel fantastic if their hair looks good, despite everything else ~ well mine looks shocking because I’m in the process of growing it out and it’s at the stage where it’s between styles ~ not long but not short ~ just in~between mess on my head that can’t be styled to look half decent when I go out.
I don’t want to go out and be seen, I feel huge shame that makes me want to withdraw and hide. I don’t want to socialise because I worry about my cognitive issues as well as my appearance and find I am tiring very quickly in the effort to maintain any kind of coherence in social interactions.
So whilst I am going through this process of prescription medication withdrawal I am also pulling away from social interaction. I am hoping that once these medications are out of my system my mind may clear somewhat and allow me some coherency.
I have a battle with myself, my body and my mind. I have created a graph to plot my weight and measurements, it spans a full year and I hope that in a years time I will find myself in a better place. It is hugely daunting ~ I have so much work to do and I have no idea whether I can even achieve my goals.
Life hasn’t gone the way I had hoped, I feel very much for my husband for having to support a invalid wife. He must be ashamed of me, of what I have become ~ it wasn’t what he signed up for. Yet despite that he still stands beside me, which makes me feel both grateful and embarrassed. I am a proud woman who really doesn’t appreciate the weakness within myself, I am vain and feel sickened by how I have allowed my body to fall into disrepair.
Was there anything I could have done differently? Could I have prevented the chronic conditions for taking root in my body? Can I do anything now to reverse the damage?
I have no idea what the answers are but for today I am allowing myself the day to cry, to vent, to scream, to despair and to wallow.
Tomorrow is another day, tomorrow I will stand up straight, hold my chin up and plough on. I will avoid mirrors and for the time being avoid others and spend time with the dogs and my family.
Life will be better, it can get better ~ but not today. Sometimes it’s okay to cry.