Wednesday, 30 May 2018

World MS Day Nails


Every time I do these nails they turn out terrible, so I normally don't do them but I really wanted to do some for World MS Day this year and had a fab idea, it was just poorly executed (Thanks to MS haha)

But this post isn't just about nails, it's about MS too. It's about to get real up in here!

So what is MS?

MS or Multiple Sclerosis is a disease of the brain and/or spinal cord but is sometimes called an autoimmune disease. This is because the immune system attacks the myelin sheath, the layer that surrounds and protects the nerves, and will scar and damage the sheath and potentially the nerve underneath. This can cause the messages being sent along the nerves to be slowed or disrupted.

It is the most common disabling neurological disease in young people and it is estimated that more than 100,000 people have been diagnosed in the UK alone. And that's just people that have been diagnosed! It took me 6 years of being pretty ill with MS before I was diagnosed and I had been suffering with Optic Neuritis for 3 years before that, so all in all, that's at least 9 years that it took for me to get a diagnosis. It can be super difficult to get a diagnosis of MS, because it is classed as a snowflake disease, no two people have exactly the same symptoms, and because it has many elements of other diseases, and it often comes in phases of relapse and remit, so by the time you have a test for something or get to see a doctor, you could be in a remit stage and not have any of the symptoms.

But not all of us get a remit stage after a relapse. Some of us have a gradual worsening of symptoms that stay with us and the damage is unable to be reversed. There is no cure for MS! Very little is known about the cause of it and there is little to no relief for some of the symptoms.

Multiple Sclerosis symptoms have a varied range and can include:
  • fatigue
  • difficulty walking
  • vision problems, such as blurred vision
  • problems controlling the bladder
  • numbness or tingling in different parts of the body
  • muscle stiffness and spasms
  • problems with balance and co-ordination
  • problems with thinking, learning and planning
  • pain
  • weakness and fatigue
  • sexual dysfunction
Everyday tasks such as brushing our teeth, getting dressed and making breakfast can be extremely difficult for some of us and can take a lot of energy and cause pain.

Another serious symptom which I personally experience a lot is Uhthoff's Phenomenon, where any raise in body temperature can cause symptoms to flare up. This can be caused by hot weather, exercise, cooking and even bathing. It can cause vision problems to worsen, concentration issues, fatigue and pain and although temporary, it can mean having to rest from such activities for way longer than someone without the disease. As an example, if I have a warm bath (not hot, just warm) this can cause me pain, fatigue and vision problems and it can take me 45-60 mins to recover from the flare.

MS is scary! Relapses are scary! Getting up every morning is a minefield and a guessing game! It won't go away by doing yoga or meditation or acupuncture, contrary to what the random stranger on the bus will tell you. In this country, there is a severe shortage of specialist nurses for diseases like mine, which means loads of people don't get the support they need, the information the need or the medication they need. I don't know everything, I don't think anyone knows everything.

I know I don't often post about the nitty gritty of my life but it's hard. Everyday, every activity is a fight. I still have lower function in my legs and left side of my body from a bad relapse 2 years ago. My anxiety and depression has been made worse by this disease too. I have also suffered from death anxiety since my diagnosis, so I try to fill my life with whimsical fuckery and nerdisms and laughter to counteract the darkness. And as Jim says, you can't spell misery without MS.

I started doing nail art after I had lost my job and was sat at home depressed. I needed it. I needed something to bring a bit of creativity and light into my life. I have seen my nail art improve a bit over the years and I will push through my pain and fatigue to try to get my vision. One day I won't be able to do it at all, so until then I will do as much as I can, when I can. This is MS!

We are fighters! We are Warriors! We are strong as fuck! Fight with us to increase our hope for a cure. MS is my non sexual life partner and I'm stuck with it now.

If you have read this far, seriously, thank you, you are awesome!

:)x


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