emotional – Dystonia and Me

Archive, August 2021

Pacing; Using A Wig

Posted on August 26, 2021 by dystoniaandme

Moments ago I quickly signed off a Facebook live as my partner walked through the front door, home from his evening gym session. Normally during my lives I’m very good at opening up and sharing my concerns but tonight I struggled. They are superficial to say the least.

Yet as Damon sat down I burst into tears. This seems to have become an evening routine. I’m physically struggling at the moment so I’m cutting corners where I can to save energy and reduce pain. This is starting to really bother me. Things like washing my hair is something I do as little as possible as it’s painful, energy drainage, and often leads to a flare in pots, eds and dystonic symptoms. Yet I don’t want to look unclean. The solution I have in mind I’m not to sure of. I don’t know whether to go for a drastic buzz cut and wig wearing while it grows back; the difference being I would follow the no poo method which would result in less physical stress on my body, or just to try to wig wear on days when I’m struggling.

Trying a wig for the first time to explore the idea

I’m still exploring my options. I’m not reaching for the razor on the back of feeling emotional no matter how tempting it may seem. The plan currently is to reach out to hairdresser’s first for advice on the above idea but also on the issue of hair loss which I currently have in certain patches which gets me down. I’d love to hear from anyone whose done similar.

Archive, May 2016

Assault & Dystonia; Taking Back Control

Posted on May 10, 2016February 24, 2022 by dystoniaandme

When I was diagnosed with Dystonia I developed a need for control; exercising it in life helped me cope with the lack of it in my body. Consequently, I don’t cope well when things are beyond my ability to manipulate. On the evening of the 1st May I was sexually assaulted. I’m not going to go into details. However, for a person who craves control in life this was yet another stark and frightening reminder of how little control I have. Naturally the police were involved, and I must say the support I have received from both them and my university has been outstanding. Unfortunately, due to a lack of forensic evidence the police were unable to charge my attacker. Whilst a disappointing outcome there’s a lot that can be taken from this ordeal. As many of you may have picked up from my blog posts over the last week, my emotions have been all over the place; one moment I’m smiling, the next I have a hatred for all near me, and then I’m crying. It’s been exhausting.

Whilst retelling the attack to the police officer working the case, he mentioned to me that many victims of assault emotionally spiral and are unable to cope; he asked that I try not to let this happen to me. I informed him that that isn’t me; I am a stubborn woman. Whilst I’ll admit the last week has been a bit up in the air, I haven’t hidden away from the world. If I can live with Dystonia, then I can make it through this. I simply refuse to let anyone have a negative impact on my life. It is mine and I will be happy!

Focusing on the positives around the incident has been key to enabling myself to feel like me again. I have been thinking about when in 2012, during a stay in hospital, a rather arrogant neurologist, who had missed the module on bedside manner, misdiagnosed my symptoms as psychosomatic. He informed my family and I that my symptoms were due to trauma and stress, and that they would continue flaring up whenever my stress levels increased. He was obviously wrong and months later I received a correct diagnosis, but this misdiagnosis and subsequent few months of incorrect treatment still irk me. However, I cannot remember the last time I was as stressed and emotionally charged as I have been over this past week, but my Dystonia has stayed at its usual spasm level throughout – despite my Botox being overdue. Proving once again that the previous neurologist was wrong. It’s a fact that for me, provides a gateway to happiness in what has been a dark time.

April 2014, Archive

Disappointed & Disheartened

Posted on April 30, 2014February 24, 2022 by dystoniaandme

Yesterday I had my appointment up in London with my neurologist. I had been really looking forward to this appointment, as I wanted his opinion on a couple of things. Firstly on my new leg spasm and if there was any treatments he could suggest that could help it. I am taking 45mg/ml of Baclofen a day for it and whilst this is controlling it, it impacts my cognitive ability greatly. I am able to hold a conversation but anything that requires me to start actually using my brain and answering questions is too much and I am unable to do so, I end up relying on my mum or whoever is with me at the time to do so for me.The second thing I wanted his opinion on was on a type of splint that my physios are arranging for me to try called Second Skin. It’s a lycra based splint that provides feedback to the brain, and it seems to work either really well or not at all.

For my leg he had no idea what to do other than keeping me on the Baclofen. He is referring me for more intensive physiotherapy to see if that will help but other than that he was lost for ideas. So I guess all we can do is hope that these new splints when I try them work, because otherwise I do not know what to do. In regards to the splints he did not say too much, he said they could do no harm which is always good to know and that they may help but didn’t say much more on the subject.

The main reason I had been looking forward to yesterday’s appointment is that in a letter I had received from my neurologist the other week he had stated in it that he hoped to have an answer for me about my IV treatment for Neurological Lyme Disease by the time he next saw me. I took this as a positive statement when I read it as recently in conversations with my doctors it had all been looking like it could go ahead if someone could be found to oversee it. Sadly this is not this the case. The hospital that originally said this can be set up if you find a neurologist to oversee it, is now saying they want more evidence that I have Lyme. By evidence they mean a positive Lumbar Puncture result.

My neurologist has said that he can arrange for me to have a Lumbar Puncture very quickly and it is up to me whether or not I agree to go through with it. He is not very happy for me to have one done as it puts me at risk of developing new symptoms or my current symptoms getting worse. There is also the problem that I cannot actually guarantee I can stay still due to body spasms so for them to realistically be able to do the Lumbar Puncture I would have to be under a General Anesthetic. The tests for Lyme Disease are also extremely unreliable giving false positives and negatives, and with a years worth of oral antibiotics in my system its more likely to come back negative.

I started taking oral antibiotics for Neurological Lyme Disease this time last year, and we have battled for the correct treatment which is IV antibiotics for the last year. For a whole year I have been put under the impression that I would get IV it would just be a bit difficult to set up. Now I am extremely upset. All I have done since I left the hospital yesterday is cry on and off. The IV would not cure my Dystonia but it would cure my Lyme, and who knows how much of my body is that! I had all my hopes pinned on this!! I am terrified that now when they take me off my oral antibiotics, which I know will happen soon, that my symptoms like my hand spasms, that improved may come back. I could not cope with that!

My plan today is to phone a local private hospital that I know treat Lyme Disease and see if they will consider treating me without the Lumbar Puncture. If they won’t then I will have the Lumbar Puncture done as I would rather risk it and hopefully get treated then spend my whole life wondering what if I had done it.

I am feeling very lost, and sad right now and I know things can only get better. It’s just hard after spending a whole year having all my hopes pinned on this treatment to have it snatched away. On a positive note I did get my injections done, and he was so lovely and apologetic. I am lucky that I have him. I just have to struggle on.

Archive, February

Blunt, Honest, Emotion.

Posted on February 4, 2013February 24, 2022 by dystoniaandme

When I started this blog, one of my many aims was to bring light to the suffering Dystonia causes by being as open and honest as possible.

On days like today when I am tired, ill, in pain and really emotional, I cannot deal with Dystonia!! I hate it! I am angry! I am fed up! I am so physically and emotionally drained from dealing with it and I don’t want to deal with it any

Archive, January

The Battle against my Foot, the Doctors and my Brain.

Posted on January 13, 2013February 24, 2022 by dystoniaandme

When you wake up in the morning, what do you? Do you mentally wrestle with yourself to throw back your warm duvet cover, swing your legs out into the unwelcoming cold, stand up and start your day? This is a simple task. One you do every day without thinking about it.

For me, simple is not an applicable word for this every day task. Most days my mother wakes me up to give me my first cocktail of medications for the day. I stay in bed, at the moment for breakfast, as venturing outside of the safety of my mattress is a dangerous move to make. When I eventually have to get out of bed, it involves me calling for my mum to help. Once I have managed to get to the edge of the bed, my mum takes one arm and my step-dad or sibling will take the other. They support me/attempt to prevent me from falling as I try to walk.

At the moment when my right foot is forced to try and work normally, it fights back hard. Often winning. My toes curl them-selves under, my foot flips over so that the top of it scraps painfully along the floor. And then to put the icing on the cake, it will twist in unnatural painful positions, as it protests violently against my will.

For me, at the present time, getting up and moving is an exhausting task. One that fills me with dread every time I need the loo, or have to move to a different room. Each time I attempt to move around, I try to clear my mind from panic. I tell myself over and over again, that this time it might just be different, I might manage to walk a few steps, like I was doing before Christmas. I fill my head with positive thoughts. However when my foot then starts to contort, it is physically and emotionally draining.

I wish the doctors could see me like this. See me at home, when I am out of my wheelchair. Where a small glitch in my brain makes me vulnerable in my own environment. Where I struggle to walk one step, where my family catches me when I collapse, where my family protect me from my surroundings when the pain causes me to have a Seizure. Where they could see that I need help now and not in a years time!

However I must remain positive, I must focus on the fact that before Christmas, I was slowly making progress, and learning to walk again. The fact I started to walk, reassure’s me that I will again. Until then I just have to suck it up and deal with it. I must be pro-active. So I shall blog , I shall write letters, and I shall make the doctors and the politicians listen. I shall make them understand just how life changing and debilitating Dystonia is and I shall make them take action! I shall not remain silent!