Fighting Dystonia, Chronic Lyme Disease & EDS Type 3… any questions?

Posts tagged ‘mental health’

Mental Health & Chronic Illness

Mental Health awareness day was last week and I wanted to write this blog post then but honestly it was too hard. My mental health right now is not great. I’m by no means awful but it’s not where I’d like it to be. It’s been an accumulation of being chronically ill for numerous years and stressful life events adding on top of that.

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A major part of the problem right now is my medication. One of the many side effects that many of my medications can cause is anxiety and depression. Whilst I wouldn’t class myself as depressed, I am aware that my anxiety and amount of pain attacks have increased recently and I’m defiantly on the weepy side. However life events haven’t helped either, Just last week I went to collect my little boys prescription from the chemist and found myself being motioned to sit silently on the floor with him due to a lady with a knife ransacking the place; this understandably has made me anxious about leaving the flat on my own, even though I know that I am being irrational as I know that the chances of being in that situation again are very small.

Yesterday I attended the emergency eye clinic at my local hospital and was informed that I have my fourth bout of optic neuritis is a year and a half. Due to this and some more symptoms they have made the decision to refer me to a specialist neuro and carry out testing again for multiple sclerosis; another spanner in the works.

Between my physical & mental health plus the stress of uni work, I feel like I need to let myself have a good cry, pick myself up and carry on except there isn’t time to cry. Don’t get me wrong I love my life but I’m finding it hard to know what to do to help myself. I force myself to do what scares me like leave the flat but it’s draining working up the courage to do so. I would talk to the doctor about it but I daren’t risk it as I know they will stop my painkillers if they start worrying about depression which I need for my seizures. I have ordered myself a mindful mediation manual and CD and hoping that a holistic attitude will help.

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Positive Days!

Last Thursday my riding lessons started up again. It was the first time I’d ridden since June, so I was extremely excited to be getting back on a horse. As usual I rode Nelly who is a complete delight to ride! I went all medicated up as I knew that after not riding for so long my body was going to feel it afterwards. As it was the first lesson back, we did lots of exercises to get everything working. Riding makes me forget I am disabled, which is an amazing feeling. Feeling like a ‘normal’ person and being able to do something I am passionate about at the same time is something I am incredibly thankful for. Riding keeps me sane, the boost it gives me mentally plus the physical activity does me the world of good. The next day I was really feeling it in my muscles so I took it easy, but it was worth every ache and I cannot wait for this Thursday.

I have been very lucky that my spasms this last week have not been too bad. I have had the usual leg spasms but nothing seizure inducing. I have started having to wear at least one pair of socks on my feet as the drop in temperature has been enough to set my spasms off. It was a bit of a shock that it was getting that cold already but at the same time a relief knowing that some socks were currently enough to ward off cold triggered spasms.

Tomorrow my carers starts! I shall be having care two hours a day, four days a week, which will be fab as not only will I have company but things like washing my hair etc will become so much easier to do. I shall have 3 carers who will come in on different days, that way if one is ill or on holiday one of the others will fill in, which is great as it will mean someone who has gotten familiar with my condition is there and who will know what to do if something goes wrong.

I received a letter from my neurologist last week, which basically summarized our last appointment. I have waited for this letter so that I can take it to my GP with me as ‘supporting evidence’. The letter states that he is happy for me to IV antibiotics for my Lyme Disease, which is fantastic and much needed, it also asks him to refer me for Cognitive Behavioural Therapy for my seizures and neuro-physiotherapy for my Dystonia. I am hoping my GP will agree to arrange all three.

I am really happy at that moment  and I feel that I am beginning to get things in place. I have had reflexology today so I am looking forward to a fab nights sleep tonight.

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