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

Posts tagged ‘Chronic pain’

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.

Image result for mental health

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.

Advertisements

Fiery Fury of Flare UPs

Being chronically means I live with the knowledge that at some point, someday I will have a flare of one or more of my conditions. I could go months without one and then have several back to back, or they could be fairly regular. Flare ups are unpredictable, sometimes it’s obvious as to what caused them, and other times there seems to be no rhyme or reason to them. Managing them is a joke. Other than knocking back the muscle relaxants and painkillers the only thing to do is try and ride it out.

I’m currently in the middle of an Ehlers Danlos Syndrome Type 3 and Complex Regional Pain Syndrome flare up. Agony is not a strong enough word to describe the sheer amount of pain that I am in. I knew my EDS flare up was coming, my pain had been getting dramatically worse over 72 hours and it felt like I had battered every inch of my body. What I wasn’t prepared for however was my CRPS to act up.

Image result for complex regional pain syndrome

It’s hard to communicate to people who don’t have CRPS exactly what type of hellish pain it is. The only way I can think to describe is this. Imagine you have several vegetable peelers the width of your leg, someone is dragging all of them down every millimetre of your leg with excruciating slowness. Digging the blade in to the point it reaches your bones. This evil being has a partner in crime, who is simultaneously pouring vinegar into your open wounds whilst dropping lit matches on to you. On top of all of this is Benedict the Dystonia Alien who is rejoicing in contorting your leg in every position imaginable heightening the pain further.

This pain is constant. Its at the point were it feels like a miracle if I manage 5 minutes without crying. My oramorph only makes a slightly dent in the pain. Sleep is a distant memory as my leg is ravaged with mind boggling pain.  All I can do is hope and pray that this flare up ends soon and does not once again become a fixture in my day to day life.

Staying Strong!

I saw this photo/quote, and felt like I should share it with you all.

I, personally, find its words to ring true. As much as we wish life was perfect, nobody’s life is. Everyone has their own struggles in life, be it financial, domestic, illness, loss etc. At some point in life we will ask ourselves, why me?! Why am I having to go through this, I can’t deal with it! If you have not asked yourself this yet, then I am sorry to inform you that eventually you will. However when it comes to that point in time, when you are asking why me? That is when you must remember that if you were not strong enough to deal with it, then you would not be going through it. The experience may make you feel like it will never get better, and that is the moment you must remember that it will get better and that whatever you have had to struggle through, will make you a better and even stronger person at the end of it.

I have asked myself, why me, so many times recently. The question normally arises when I am going through a particularly bad spasm or am in a lot of pain. However, each time the pain stops and I relax, I can think more clearly, and I know that I would much rather go through this than see a member of my family, or anyone else go through it. I know that I am strong enough to deal with it and that’s why it is me who has Dystonia.

It is up to us to make the best out of a bad situation. For me, I have decided that instead of curling up in a ball and letting myself become a ‘sufferer’, I shall instead be an advocate for the condition. I shall try my best to make a difference! You never know, I might!

So if you ever are thinking, Why me?! Remember the above quote and know that if you were not strong enough for this life, you would not have been given it!

 

Today’s Support/Research Group and Dystonia Update

This evening I went to a group that my GP signed me up for. It is designed for people with chronic pain symptoms, to help give them coping mechanisms that they can learn to use in daily life. The group is also for research so we were asked to answer questions, and give them our life and medical history, so that they can compare the results the group gets at the end of the 12 sessions to the answers provided at the beginning.

At the start, I must admit I was a bit dubious about the group, the leader seemed a bit mad, and everyone there was a fair bit older than me. I was also concerned with how much I would be able to take part in, as I am in wheelchair. However by the end of tonight’s session my concerns were long gone. I had managed to take part in everything, when they did walking activities, I copied their upper body movements, and swayed about in the chair. The other people their were lovely and I have a good giggle with them all. We also focused on our posture and did breathing exercises which I found to be very relaxing. The two hours flew by, and I cannot wait for the next session!

Today has been a rather positive day. After six hours of calling, I finally managed to get hold of my Consultants Secretary, who has promised to chase him, and have him contact me ASAP, I am hopeful that he will, but I shall just have to wait and see. I have had no Non Epileptic Seizures at all today which is fantastic and my head and body are feeling much better.

My local Riding for the Disabled stable phoned me today, and as long as my Non Epileptic Seizures stay calm, then I shall hopefully have my first RDA lesson next week! I am rather excited!

Tag Cloud