I was blessed with Primary Progressive Multiple Sclerosis. Who would know that one day I would be diagnosed with it after so many years trying to work out why I felt so rotten all the time. Bit of a shock to the system I can tell you, but well lots of people have things to contend with don’t they in life, and as we get older, bits start to fall off and we get older, and more tired.
Who would have thought that having MS would turn me from a happy fun loving person, who loved to talk and meet people and have lots of friends. I loved to entertain my family especially for Christmas and special occasions. Mike and I would often hold Bar B Q’s in the summer and he was actually a very accomplished cook with the charcoal. Life was good really.
Mike and I often went on holiday together and we would take his mother too. We went to USA, Greece, Brazil, Malta, corfu, crete, rhodes and other places. I was full of energy and had a quick wit and mind and well actually quite a good sense of humour. I had a great job, worked at least 60 hours a week, ran 11 learning centres and 54 tutors were in my care.
I have accepted my illness what else can I do really? It is here and now i have learnt how to deal with this uninvited visitor.
I hate it so much as it has taken so much of ME away and it robbed me of better times with my Mike.
I am never really sure who is actually standing in the mirror it looks like me, but well it doesn’t feel like me. It feels like my body and brain is there but like the cliff edge lots of who I was has been eroded away and I am kind of left with this accumulation of cells, and blood, and fibre and body that only has the capacity to actually exist with half of what it had. Like a glass half empty kind of feeling. Half empty
Hands up how many of you reading this have a calendar or diary, and its filled with dates and places or things you are going to do? I don’t have a diary or a calendar. I have a white board and if I am lucky to actually write on it a visitor is coming or I am booked to go and visit someone, do something really cool, if I have to change it at short notice I can simply WIPE IT OFF, like well my MS will have WIPED me out that day. I never know where this disease is going to take me in anyone particular day.
I can have a really good nights sleep and a rotten day, and vice versa.
Friends or family will invite me for a party, or gathering and I can write it down on my white board but I have no idea if well I will be well enough to actually get there.
Fatigue is my enemy and pain. Now let’s get this straight ok, fatigue in MS is not just feeling a tad tired and a quick sit-down on the sofa will resolve it. No way for people with MS its like being hit by the worse flu ever, then have to run a marathon. OK think about it, if you have ever had flu, and your body is just sunk into your mattress and you cant get up, that is MS fatigue. MS Fatigue can just hit you in seconds just doing something silly like talking to someone on the phone.
I am usually not too bad when I wake up and I have learnt to work around my fatigue. I do everything first thing but as the day progresses so does my fatigue a bit like a battery winding down. By 2pm I am wiped out like a hard drive nothing left in it of any use, and just resting. Just talking is exhausting and it can make me so tired I sit there yawning and gasping for air which must look pretty rude, but believe me I don’t do it on purpose.
Just going out is a huge effort for someone with PPMS. It takes a huge effort yes it is good to get out, but you know the consequences are going to be even worse fatigue when you get home, and pain.
Yes pain. There are some people even doctors sadly who think there is no pain in MS wrong. Yes some people when they first start their journey may not be bothered with too much Neuropathic pain it depends largely on where their lesions are located.
Mine are in my spine. I suffer Neuropathic pain 247, it never stops or gives me a break ever. I cope with it during the day because I am doing things, like writing this to distract myself. Now going out will make it worse because my brain has to work harder to keep me safe which makes me more fatigued and then allows the pain to run riot.
Pain burning, fizzing, tingling, buzzing, prickly, spasms and cramp, muscle stiffness, oh and one of the worse the ITCH. I dont mean a little itch, my hand and fingers will feel like I have had the worse CHILBLAINS ever and you cannot get relief. Lol the times I have had to check my scalp to make sure I didn’t have nits the itchy patch on your leg you scratch raw it is relentless. It can change in seconds. Its like a roulette wheel where will the ball land next…..
Just knowing if you go out it can give you so much pain you want to scream and so much fatigue you want to just stay on your recliner why on earth would you want to go out to deal with that, or have people come to see you and leave you like that?
Well you have to really try hard to make the effort but please whoever reads this and doesn’t suffer from an auto immune or chronic illness or MS, be patient with us, we don’t want to be boring or upset you, we are sick sadly and its hard really hard to be this way when you have led a really exciting and full life.
I had my family over for Easter lunch and I made a huge effort to put on food, yes it was all frozen and zapped in microwave but I really enjoyed myself, and later I had other members of my immediate family turn up and my Easter day was lovely, but now today even writing this I am so fatigued and in pain, I just want to curl up and do nothing, but I am determined to try and have a glass half full day for a change but at the moment my battery is winding down very fast, so I will close now, hope you have a little more insight into my journey.
Have a good day and thanks for reading.