Although I only received my instructions to isolate myself for the next 12 weeks from the government on Monday, we had infact already been in isolation for a week as both myself and my partner Damon bad been symptomatic. Whilst I’m pretty much symptom free now, Dame is still locked away upstairs as he remains unwell. Whilst he would only be considered a mild case, it’s worrying none the less.
We decided early on that we would follow all instructions to the letter as we know how risky a simple cold to me can be. The symptoms I had last week had me reaching for my inhalers constantly. What hit home in particular for me was our two year old son is also on the shielding list due to his medical issues. Luckiky, as much as he desperately wants to go to the park, he’s quiet happy accepting, that there’s a nasty bug outside, so for now he can’t.
It’s hard however to follow the governments instructions when my partners in isolation. For example I’m not really supposed to be particularly near our children and supposed to be three steps away from everyone. Well with Damon isolated I’m the sole parent, and they are now both sleeping in our room. There’s no alternative. But we’ve got to make the best out of a bad situation.
I’m starting to experience more spasms and pain as my Botox wears off. My next lot is supposedly in London at the end of next Month which I’m expecting to be canacled. I’m hoping an alternative can be arranged at a local hospital in the meantime.
I would love to hear how everyone’s isolation is going. So please in the comments on my Facebook page do let me know. I’m aiming to keep this isolation diary updated daily either with blogs here or VLOGS on the Dystonia and Me page.
After a year and a half of waiting tomorrow I am being admitted into The Royal National Orthopedic Hospital Stanmore for intensive rehabilitation for my Ehlers Danlos Syndrome Type Three. I am a mix bag of nervous and excitement. From talking to previous inpatients of the program it sounds extremely positive and successful. There are many different components to the rehab, such as hydrotherapy, physiotherapy, pain management and sessions with psychologists. On the most part I am very optimistic, my consultants all feel that the treatment should offer significant improvement.
The only part of the program I am wary about is the psychology sessions. If I could opt out of these I would. Now I shall be sensible and fully cooperate with them but I can’t help my reluctance. I have had years of sessions with varying types of psychologists. Since I have been ill I have had specific sessions with cognitive behavioral therapists to attempt to control my seizures, however out of the three therapists I have seen only one has looked at me holistically. Due to this my file now contains a note from my neurologist instructing therapists not to focus on my past and informing them it has no impact on my medical situation. Click on VLOGand blog for more info. However, many therapists choose to ignore this. Whilst I am sure the psychologists I am going to be seeing over the next few weeks will be lovely, I worry that they will be like the many I have seen before.
I get admitted at 8:30am tomorrow morning, so it’s not long to go now. My neurologist is convinced it will make a huge difference to my jaw and I’m keeping my fingers crossed he is right.
As anyone who checked out my latest VLOG will know, after a highly entertaining bus ride the other week with a fellow spoonie I have decided to blog more openly about the dates I have been on. Up until now I have kept them to myself purely because they didn’t go anywhere, however as this lovely girl pointed out to me, it’s the sort of the thing she would like to read. So I’ve decided to do a couple of blogs retelling these dates – the guy’s names and locations have been changed!
Just before Christmas a guy I’d met a handful of times in the local clubs and around uni asked me for a drink. Thomas knew I was ill, so in my eyes we had already passed the first hurdle. There was going to be no need for an awkward ‘so by the way I have a severely dysfunctional body, you cool with that?’, conversation followed by spluttering and murmured excuses into half-drunk cocktails. I was feeling far more relaxed than I usually would do, simply because I didn’t feel like I had the ‘disability burden’ to get out there.
It was the usual routine, pull every outfit I deemed to be flattering enough to wear on a date from my wardrobe, and then force my friends to pick the winner. It’s a wonder they put up with me really. Whilst I was spending so much time on my appearance, I did not stop to think about strapping down my left arm. The spasms in this arm have been the death blow to so many dates but I still don’t learn. After all, it just isn’t the most attractive look. If I had thought about how twitchy I had been that day I would have seen the disaster in my plan.
The start of the date was fantastic; we were sat across from each other in an adorable cocktail bar with scented candles everywhere. The conversation was flowing with pauses only for laughter. We seemed to connect, and after several more drinks decided to go for a walk. Tom was a gentleman and held the door open for me, as I turned around to thank him and make a joke I twitched. I don’t mean a little twitch either, it was the sort that leaves you feeling bruised. In typical fashion I caught him in the neck. If anything is going to kill the mood on a date, it’s that.
At the time I felt awful. I spent a good ten minutes apologizing before we decided to call it a night. As you can imagine we’ve not spoken since, I wonder what put him off?! Luckily I can see the humor in these situations as they happen far too often.
Since I developed Dystonia in 2012 my past has been dragged up by varying Drs, repeatedly. I was physically and emotionally abused as a young teen for a period of a time, with the support and help of my loving mother and friends I managed to come out of this dark time as a positive, strong person. I had many years of counselling to help me put me put to bed that year of my life.
Unfortunately my GP loves to relive the past and enjoys rehashing old news. He has currently managed to convince himself that my ‘tragic past’ is the cause of my medical conditions, and that they are psychosomatic symptoms. In any other circumstance I would be upset at his words. However I have a lovely letter from my neurologist stating that my history of abuse has nothing to with my current organic symptoms!
I’m not sure why my GP has decided to ignore this letter, perhaps it is just because it makes life easier for him, after all I am a complicated mix of medical conditions but that’s no excuse for his current degrading tone and behavior. I can’t help but be concerned and wonder how many other Dystonia suffers are subjected to this behavior?!
I can only hope that as awareness for the condition spreads the attitude around it changes too.
When I was diagnosed with Dystonia in 2012 it took a few days for reality to really sink in. But after allowing myself to accept the diagnosis I launched myself into researching the condition. Something I’m sure many of you sufferers do. The problem with the internet is that you can find just about anything you want to find on it. Researching useful information can be problematic.
I was lucky and stumbled across The Dystonia Society’s Webpage quiet quickly (http://www.dystonia.org.uk/). Their website is packed full of easy to understand information and resources. It helped me come to terms with my condition and understand fully the condition I was dealing with. Previously I had not understood that it was my brain sending incorrect signals to my muscles causing them to go into painful spasms. I had simply thought they were just spasming.
The Dystonia Society over the last couple of years have been a wealth of knowledge and their helpline has been of great comfort. Another fantastic site is The Dystonia Medical Research Foundation (https://www.dystonia-foundation.org/). This is the American equivalent of the The Dystonia Society and is another resourceful website, providing fantastic information on the condition and advice. Websites such as these two are a great resource for suffers to use as a tool to educate Doctors, health professionals and family members who don’t understand the condition. They even have a have section for schools. I find myself checking these sites constantly for new material I can use to help advise others and am never let down.
When you become ill with Dystonia there are a lot of changes you have to make to your life. Mentally you often feel like you can still go out for that morning run, or dance the night away with your mates. The reality is extremely different. No two days are the same and spasms can cause simple daily tasks such as getting dressed to take hours upon hours.
Whenever I visit my Neurologist or my GP they both tell me to slow my life down and take things easy so as to give my body a bit of a break. They have been giving me this same piece of advice for over two years now. I know I should take their advice on board. After all they would not repeatedly tell me it if it was not necessary, however I find that I feel so determined/ stubborn to live as normal a life as possible that taking it easy just doesn’t seem to feel right.
I know that realistically my body would most likely thank me if I started taking it easy more often. Pushing the boundaries over and over only results in pain, I know that. However there is some small part of me that each time hopes that this will be the time I will achieve just that bit more. Instead my body goes in to hideous spasms that I have too spend a few days recovering from each time.
I think adjusting your life after diagnosis is one of the hardest parts of the illness. It’s not just your work life, but also your family and social life that are impacted. Having to explain to people that you yet again cannot do something because of Dystonia is incredibly disheartening, it helps if you are surrounded by people who understand and support you. At times it is not the spasms that prevents you from taking part but the fatigue from the treatment. I find the medication leaves me half asleep, which in turn impacts every aspect of life.
I have been living and adapting to the condition for around two and a half years now. I’m not sure if you can ever really adjust to it. I don’t plan on ever slowing down. I enjoy my life too much. I believe the best way to cope with this hideous condition is to take each minute as it comes.
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