There ain't no party like a MS party...

Well I'm going to a friends birthday party tomorrow so I thought it would be interesting if I wrote this blog about the challenges that MS can throw up which make getting ready and going out more difficult.

So I guess I should start at the beginning of the night and  getting ready....

Bathing

I have muscle weakness and fatigue and it makes getting in and out of baths difficult and potentially dangerous because I often have slips and falls. 'Drop Foot' is another common symptom of MS, which also makes slips and falls more likely because you have to concentrate on lifting your feet up properly with every step. If you loose concentration even for a few steps on a slippery surface its very easy to seriously injure yourself. Some MS sufferers can't feel hot and cold, and so making sure that bath or shower water is the correct temperature is another thing that people without MS don't have to give a second thought to but a sufferer has to worry about. MS has also given me 'Restless Legs' so sitting in the same position for more that 10/15mins means I have muscle spasms in my calfs which make anything more than a quick dip almost impossible.

I can't tell you how much I miss being able to just have a soak in the bath and not have to think about if I'm well enough to get in and out of the tub on my own.

Hair

As I said earlier I have muscle weakness in my legs,arms and right hand. Holding a hairdryer for the 15mins it takes to dry my hair becomes very uncomfortable as my arms start to feel heavy and my hands loose grip (after about 2-5 mins) and I drop a hairdryer on the top of my head! You can get bonnets which attach to your hair dryer at home which can help if you find holding a hair dryer difficult. Here's a link showing where you can buy one, but it does get very hot so be careful guys!

It can also be difficult for a person with Multiple Sclerosis to grip tightly enough to make using curling tongs or straighteners safe for the entire length of time it takes to do your hair.

Make-up

Grip and dexterity is another common complaint and one that I suffer with often. This can make holding onto small brushes, eyeliner pencils, mascara wands or bottles of nail varnish difficult and if your anything like me means you've dropped make up on a cream carpet and poked yourself in the eye at some points. Small pots (foundation, moisturiser, eyeshadow) are sometimes impossible for me to undo when my hands are bad. 

I personally find it embarrassing and tedious to have to keep asking for help opening and closing bottles, screw tops and tube lids, so I tend to not use something if I can't do it myself which is really upsetting when friends don't have to worry about it and it seems such a struggle to me.

 Clothes

When I was first diagnosed I remember crying and crying to my Mum that what annoyed me most of all about MS was that I couldn't wear heels on a night out. I know it sounds about vain but as a friend pointed out to me that "young girls should worry about shoes and I was still a young girl". I personally still cant wear heels and be comfortable, but I know alot of people who have changed to a heel of 4" or less and wore a thicker heel to make it easier to walk in without too much pain. Just take baby steps as if you've never worn heels before, start low and get higher when you feel comfortable and confident.

Alot of people with MS also need to go to the toilet urgently without much or any warning, and after a few drinks, get even less of a warning. Because of this, the clothes you choose have to be practical too. Tights can be tricky especially if like me you get hardly any warning you need to use the toilet at all. Long trousers or dresses can also be a tripping hazards especially with Drop Foot and weak leg muscles.

The next day...

When I go out dancing, I can feel fine all night, but the morning after the night before I have to use a walking frame as my legs feel bruised, heavy and very weak. I'm so jealous of my friends who can go out on a whim and have a brilliant night, I however have to make sure I have nothing to do for at least two days after the night out so my body can recover. Fatigue is such a real problem with MS and after a night out it can make the smallest task become a huge job. For me, fatigue feels like the worst flu ever where every tiny movement takes all of your energy.

This amount of fore thought needed just to go to the pub for a few drinks can have a real 'downer' effect on and evening out for an independent person with MS. It has made me feel worthless and like a burden on more than one occasion and from going onto different MS forums, worthlessness and not wanting to turn friends into carers seems to be a universal worry.

Well I suppose I'd better get back to to planning my outfit for tomorrow and I'll let you know how it went next time.

In the mean time don't forget you can ask me questions to do with research or my own personal experience with MS just drop me a line.

Claire xx

Here we go...

Hi guys,

Well where to start...My names Claire and I'm 23. I've been advised that keeping a blog or diary might help me (and hopefully some others) work through some of the feelings of sadness, anger but mostly confusion that being a young person with Multiple Sclerosis leave you with. I'll also be writting about any symptoms I experience and any other MS related news items or 'miracle cures' I hear about.

But lets start at the begining..

Before I was diagnosed I always associated MS with women of a certain age, mainly because the few people I knew with it were exactly that. I, like most 20 year olds, assumed that I was indestructable but that changed in the summer of 2008.

My first symptoms happened when I was 20. I'd been enjoying the few days of summer we get in England by spending it sitting in the sun with my friends. Then one afternoon I experienced a throbbing headache above my right eyebrow and blurred vision which I put down to being out in the sun for too long, and as a red head the heat often left me with those symptoms anway! I knew somthing wasn't right when my headache worsened and painkillers weren't working. My vision got to the point where I couldn't see a thing unless I closed one eye and the double vision was effecting my dexterity and balnance. Within the space of 4 hours from the orginial symptoms of headache the entire right side of my face had 'dropped' and become paralysed (Palsy) and my left eye had turned round so my iris wasn't visable at all and all you could see was the white of the eye.

My parents are both Nurses and took me to A&E worried that I'd had a stroke. If I'm honest even hearing the word Stroke didn't scare me at that point because I even though my face clearly showed there was something wrong, I didn't feel ill so I assumed everything would be fine. Teenagers eh?!

The doctors in A&E gave me an eyepatch for my left wandering eye which really helped with my balance, and did a number of different neurological examinations testing strength, dexterity, balance and speech. I thought I'd passed with flying colours untill my Dad and I were called into a private room so the Emergency Consultant could tell us what she thought was wrong. She told us that she thought it was MS but needed to do a 'Lumbar Puncture' (also called a 'Spinal Tap') which would involve using a syringe to remove fluid from around my spinal cord which could give a definate diagnosis of Multiple Sclerosis.

I still didn't feel worried or sad about MS at this point, and looking back I can see that was because of my ignorance about the disease. My aunt has MS and she never showed any visable symptoms so I just thought it might make me tired more easily but not for years! I was most worried about not being able to smile for me 21st birthday and to this day its little things like that which upset me most.

I was given steroids for 4 days then sent home. I got some small movements back in my face but I was back in hospital 2 weeks later with even worse facial palsy which now made it difficult to swallow. I was again given steroids and started to improve again. Its been 3 years since I was first diagnosed and my face still isn't back to normal. When I'm ill, hungover or tired the drop on the right side of my face becomes more obvious and I've got used to that now even though it still upsets me every now and then.

I've had a few severe relapses since then including loosing most of the strength in my legs meaning I had to use a frame or wheelchair all the time but thats for another time.


These are the symptoms I experience daily:

Drop Foot: I trip over my own feet 3 or 4 times a day
Loss of strength and dexterity in my hands: I'm always dropping things and am unable to hold very small or very big objects regardless of their weight
Bladder Problems: Needing the toilet often without any warning
Weak Legs: I am unable to walk more than 10m on a bad day, 50/100m on a good day.
Painful  muscle cramps: In my upper arms, lower back and calfs.
Right sided weakness in my face:
Shooting/stabbing pains: Usually in my hips and back after or during walking.
Fatigue: Not being able to stay awake and feels like I have heavy limbs.


Well that's it for tonight But I'll try and post every week so If you want to ask anything, or want to to find something out for you about anything to do with Multiple Sclerosis just ask :)

See you soon
Claire