Today the NHS celebrates its 70th birthday, and with this milestone it is important to acknowledge what a valuable asset it is. With a government that seems to care very little about it, it is more vital than ever before that we shout from the rooftops about the wonders it performs day and night 365 days a year, and make our opinions known when it comes to ensuring that the NHS receives the funds it needs to continue you the amazing work it currently performs.
I am lucky to have experienced both sides of our NHS, as a student midwife I witnessed the strain in staff numbers and how overworked they are; as a patient I honestly doubt whether I would still be alive without them. I’ve had more ambulance trips than I care to count, and spent many months over the years being cared for as an inpatient. Without my neurologist I know that I would have little quality of life; I would not be able to eat, drink, talk, see, or move my limbs. He enables me to live a life that is fulfilling.
To the NHS I say thank you. Without you many lives would be extinguished, and many more would be experiencing incredible suffering. Thank-you for doing your all every day and night all year long. Thank-you for continuing to provide outstanding care despite your own government failing to supply you adequately. Thank-you.
In the winter I quickly discovered that cold weather and Dystonia do not mix, my body spasmed constantly and I had to leave the house with several layers on and a hot water bottle or two! I never worried about how the heat may affect my Dystonia, and if our weather had stayed typically British then I am sure my spasms would have stayed to their ‘normal’ rate.
Now don’t get me wrong I love the fact we have had a lovely stretch of untypical heat, which in turn has led to BBQ’s, evenings in the garden etc, however I don’t love that it is sending my feet and legs barmy. I get through the day but by the evening I want to beg my feet to uncurl. In desperation I bought a desktop fan for my room to help me at night, which is so far working a treat. It has been a delight though to see the blue skies and watch birds on the bushes outside my bedroom window. Summer always brings a little uplift in mood for me which is fantastic.
My Botox is definitely kicking in now and I have barely any pain thanks to the spasms disappearing. I have some pain in my TMJ‘s (your jaw joints) but this is nothing in comparison to what I was in. It is amazing how much of an impact these injections can have and I feel very lucky that I respond well to them.
Thanks to the permission of some amazing people I have compiled a letter for the Health Secretary containing the different stories of people with Dystonia and their struggles for help. The Health Secretary told me he could not deal with just one case so I decided to compile these stories and open his eyes to the struggles we go through to receive treatment! Whilst I recognise some people have had fantastic service from the medical society, so many people have not and their voices need to be heard.
If you would like to help me open up the government and the NHS/private doctors eyes and try to get more help for us sufferers then please contact me with your story at either firstname.lastname@example.org or here https://www.facebook.com/dystoniajourney .
On Tuesday night I ended up going to A&E to be treated for dehydration. By the time I was seen I had been without water, medication and food for about 32 hours. I count myself extremely lucky that the triage nurse and Doctor who treated me actually knew about Dystonia – this is a first! It took awhile to get a cannulae in me as my veins had done a disappearing act. I was given IV fluids and IV medication. The medication they gave me was called procyclidine. I had never had this medication before and was stunned by how well it worked.
The doctor who was looking after me was very caring, and came and checked on me every five minutes. He instructed me to take the procyclidine for two days (today is my last day on it). I am extremely glad they administered it to me as it really does seem to have had a beneficial effect. I am going to discuss with my consultant, whether it was worth continuing this medication or not.
I am glad that I was treated by two very nice people on Tuesday, as it restored a bit of faith in me for the NHS. Every time I am dismissed by the medical profession it ends up inspiring me to make a difference! Just because my illness is not well known does not mean I should be shoved to the side.
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