How is my mate MS

 

At the weekend we had our fortnightly video chat with my bestie and her hubby who live in Australia. Twenty six years ago they embarked on a tour of Europe and other countries but based themselves in the UK. To cut a long story short my bestie (LM) started working at a temp at the company I used to work for. They also lived just half a mile down the road from us. Soon we became best of friends and the four of us spent an awful lot of time together. Then after approximately nine months of first living in High Wycombe and then in London LM fell pregnant and they moved back home. Home was in fact New Zealand but following the devastating earth quake in Christchurch back in February 2011 they moved to Western Australia. We have kept in touch ever since with several visits by my bestie as well as one visit from them both. The Dean Team even went out to WA in 2013 where I even had my own hydrotherapy pool😎
Next year they will be making the trip over to the UK once again. They asked on Saturday “REALLY how is your MS?” I replied in the flippant manner that they have got used to over the years “I am perfectly fine from the neck up”

So that got me thinking, what has actually been going on recently, well the hot weather does take things to another level. 
I have the added advantage of being fitted with a supra pubic catheter and thankfully my days of picking up a UTI have long gone and I can drink as much water as I like. My carers log my urine output on a daily basis and yesterday my output was 4.5 litres and the day before it was 4.2 litres and as one of my district nurses told me I have champagne wee. However as was pointed out to me by SMD I do need to supplement some of my essential electrolytes as they are getting diluted but drinking cans of Red Bull is not the answer, I choose to use something that focuses on natural energy and minerals/vitamins.
The heat however does have an impact on my fatigue, Trigeminal Neuralgia and brain fog (although the brain fog could just be my menopause). As a result of the fatigue my nanna nap in the afternoon does go on for a little longer.

A huge affect is more in the evening and I know is experienced by many people with MS and that is biting the inside of my mouth to the point I draw blood. Unfortunately the pathways are not clearly working properly and my brain thinks my inside cheek is a piece of food.
The TGN also does not like the heat and further branches off the nerve are now also joining in, it’s silly things like blowing my nose sends extreme nerve pain down my nose (but only the right hand side). Yesterday evening was so severe it bought tears to my eyes.
The heat has resulted in me getting blisters on my thighs where my catheter tube and my skin have rubbed together and can’t breathe. I now have a patchwork of dressing’s to cover them up in the daytime and at night I unstrap my leg bag and lay it on the bed so my red raw blisters can get some air and dry out. If anyone has any tips on how to avoid this then please tell me.
My spasms are yet another invisible part of my MS, thankfully the majority of them happen in my legs and at night time. I am told by my physio that in this heat my tone gets worse but hey I could have them all the time. My neurologist prescribes me with Baclofen and Tizanidean. I used to have Botox in my legs when I lived in Buckinghamshire but now in Hampshire it is not an option and my spasms are not bad enough to have Satvix. 
These are just a few of the invisible affects of MS that I have, compared to a lot of people I am fortunate. I remember when I was first diagnosed I would rock up in a blue badge parking area with Shannon in the back of the car and before I had even got out the car I had people banging on my window telling me just because the parent and child spaces were full I couldn’t park there. I’d say nothing and open the door and put walking stick out first and then get out  with a extremely smug smile on my face. The most important thing for me is to stay positive that really is my coping mechanism. Last week I took advantage of the schemes and discounts that organisations give to people who have a disability. I booked using some of my birthday money for both myself and hubby to go to our local theatre to see ’Crazy for You’. A musical with a feel good factor. Most theatre companies give a reduction in their prices for not only the person with a disability but also their carer. 
I was lucky enough to have money from several members of my family so it was onto the next thing, hubby and I were fortunate enough to go to a couple of the 2012 Olympics I got to go to all three events and hubby went to two whilst SMD went to one. Ten years ago all we had to pay for my ticket (£15) whilst hubby/SMD went free moving on ten years we thought we would book tickets for the Commonwealth Games in Birmingham, okay the price has gone up to £22 but the carer goes free.
Some of the sports have able bodied athletes and para athletes competing on the same day. We have chosen aquatic’s in the first week and field and track in the second I’m so excited and although both visits will be a 300 mile round trip hubby assures me it’s worth it and he doesn’t mind even better I have birthday money to help pay towards the diesel! 
All in all I am able to live a happy and busy life. My carers tell me I have turned the whole of July into days out to celebrate my birthday, it all started on my actual birthday when my sister got us tickets to join them for the day at the New Forest Folk Festival and that started the ball rolling. 
My MS certainly provides me with experience’s I wouldn’t get if I didn’t have a blue badge only last week friends came down from Buckinghamshire to see me and we went for a walk along the seafront. Then silly me I needed to empty my catheter bag, hubby and I went to the accessible loo. Outside the door was unlocked although normally you would need a radar key to get in. 
We flung open the door only to find the back of a bloke sitting on his scooter shooting up. We made a hasty retreat and stayed and waited for him to come out a mate of his came round the corner and went in and told him to get out. After five minutes he did come out apologising and sighting his directic tablets making him wanting a wee for so long. Although I had to smile to myself both hubby and I agreed it was really sad and I just hope in future we won’t come across another person with a tourniquet around their arm and a needle in their other hand. Ten years ago when we were at the Olympic Park we waited ten minutes for someone to come out of the loo to be greeted by a couple completely red faced and giggling. Maybe it’s time for me to revive my accessible bog blog!Stay happy folks there’s lots in this world to be positive about, loving someone is far easier than hating someone or something xx