Dizzy and I thought it would be lovely to share other people’s experiences with MS, especially as it is such a complicated condition, which everyone experiences differently. Today our post is by the wonderful Patrick from Aid4Disabled. 🙂
Patrick has had MS for several decades, and his life is now mostly controlled by the condition. He does manage to throw off the shackles from time to time though, and is an active service user at several universities. 🙂 He also enjoys learning how to run his website, which is all about life with MS, and helping others by informing them on what he uses to help him in his day to day activities.
A long journey with multiple sclerosis
I’m Patrick and this is the story of 40 years of my life. I did not piece the whole story together until I took medical retirement in 2012.
It all started in 1972 when I was almost 18. One day I was in my parent’s antiques shop when two young dealers called in. They offered to take me out for a drink. After a pint I was desperate for the loo. I went to the gents but then I could not have a pee. I wonder now, was this the start of my long journey with multiple sclerosis?
I completely forgot about this event until a few years ago. Nothing like this happened again for 7 years, but then it was very different.
I was then 25
Working in the antique silver department of the auctioneers Christies South Ken. I was an auctioneer’s clerk and sat up on the rostrum next to the auctioneer. Apart from trying to look important I made up the bills as the auction progressed. Remember this was still in the age of pen and paper.
It was half way through a silver auction and suddenly I was bursting to go to the loo. Oh my God what should I do? This had never happened to me before. Do I try to hold on or leave and go for a pee? I could not stop the auction. Then the lock gates opened and my bladder emptied itself. I was totally mortified. A similar thing happened at a wedding a few weeks later.
What did I do about these incidents?
I did absolutely nothing. I put the problems down to stress plus I had just had a very bad cold at least that is what I reckoned. I was living with my future wife, and I think she was as non-plussed as me. The problem disappeared and life carried on as normal. Young men like me will do anything to avoid going to the doctor.
Even now, 38 years later, I can still remember that feeling of inevitability. It was going to happen, I was helpless, I had no control over my bladder whatsoever.
Smaller relapses
A few years later I periodically had sudden urges to go to the loo and have a pee, but nothing else significant happened to me. Looking back I realised that this was my undiagnosed MS popping out to say, “Hello”. Incidentally, I am reasonably certain it would not have been recognised in the 1980’s.
I was 40
I got double vision when driving in 1994, a bit frightening. The next day I was frogmarched to my GP, and 6 months later a neurologist told me I had MS; never heard of it then. I think there were a few medical students in the room at the same time.
The consultant then said, “I will see you again 6 months’ time”. There was no advice or backup. It really was as brutal and brief as that. I soon found a new consultant.
Six years later, in 2000, my MS morphed into secondary progressive and nothing went away. Instead everything very slowly started to get worse and worse.
Medical retirement arrived in 2012, suddenly I was free to live life at my speed. From the ashes of retirement I created my own website. Writing about my MS now helps me to live with the disease and it releases my inner creativity. Who says you are too old to learn new skills?
Have you shared any of Patrick’s experiences? And have you ever had an illness that has led to you learning a new skill? 🙂 Dizzy’s being her usual curious self. 🙂 xxx
Not knowing too much about MS I have to experiences with friends. One was a boy in 6th grade that my friends and I had a crush on. We graduated and left school and everyone went their own ways. Many years later online we all caught up and my best friend started calling him. His name was Eric and he had become a sailor only later laid low by MS. She told me how he was doing and that he enjoyed her calls but that it seemed the MS was doing devastating things to his body and suddenly out of the blue we found out he had died. My first love of my life my high school boyfriend caught up with me again on FB. I was thrilled to be friends with him again and we were both glad to know we each had found our special loves. He and his wife have lovely children but both have MS. When he was diagnosed and at the time searching for love it was the way they found each other. I was so proud of him when I heard that he had returned to university even with MS and got his degree. He and his wife are both fine and happy. So these two very different stories told me that I could never fully understand how it is to be diagnosed with MS and that it does different things to different people. Hope this finds you and Dizzy doing alright and looking forward to the weekend.
It’s such a strange condition, and it’s so weird how it can effect people so differently. I was so sad to read your first story. But it was lovely to read about your high school boyfriend and how well he is doing with the condition. 🙂 x I hope you and Dotty are having a lovely week! We had our first snow of the winter last night and are keeping tucked up in the warmth today. 🙂 xxx
I wish Patrick well on his journey where life takes its twists and turns, and there is always something new awaiting you, but not always in your favor.
I have learnt to take the rough with the smooth
It is a long journey I am sure Patrick, some days much more frustrating than others. My late mother had many medical problems – she was hit by a car at age 11 and had 42 orthopedic operations over the course of her lifetime, so I watched her painful journey – like you, she was stoic and carried on.
Thank you Linda. 🙂 xx How are you? We had our first snow for this winter last night! xxx
I hope it did not last for long Heather. Our snow has mostly melted due to the freezing rain we had and today’s rain. We have more ugly weather on the way, more bitter cold and another snow event. I would like to wish this Winter away. even though we had been pretty lucky since most of the Winter has been snow-free. Parker may think I abandoned him! Hopefully you didn’t have anywhere you had to be today and could just watch it from inside. I do enjoy that part of working from home after taking the bus and dealing with the elements for many years. Take care of yourself Heather. {{{ }}}
I can totally relate to only putting all the pieces together years after diagnosis. I’m still remembering weird symptoms and wondering if it was the ms. Like Patrick, I’m using my medical retirement (i like that term!!) to work on writing. There can always be a positive. Great post! 💕 Amanda
I had exactly the same thing! And you do just put the odd symptoms down to stress, or life! It’s not until later that you can piece it all together and realise that they were the first signs of MS. I like that term too! And I think it’s so wonderful to find the positives and use it to explore and work on new things. 🙂 xxx
Thank you for sharing your journey, Patrick. I don’t have MS, but it seems like the condition, and many other chronic illnesses, results in such different journeys for everyone. I can see why you put the initial incidents with your bladder down to stress, or feeling under the weather generally, not thinking it a big deal until there were more incidents and things got worse. It’s wonderful that you’re using your experiences to write and share, to unleash your creativity, and you’re so write – never too old to learn new skills and it’s never too late to try new things. I think from my illnesses, and having a stoma too, I’ve grown as a person & it’s led me to blogging, and I think anything where we can eek out some positives or make the most of our situations is so important. Thank you for sharing! 🙂
Caz xx
Thanks, you just have to be positive and use the opportunity to develop new skills
I agree too. I think most of us start with odd, random symptoms that we just put down to stress or something. I always think it’s so helpful hearing other peoples stories too, so we know we’re not the only one who has gone through these things. x Thank you for your lovely comment as always Caz. 🙂 xxx
I was diagnosed with multiple sclerosis 1 month after I turned 45. My grandma is 96 and had it since she was in her 20s. I have been on Copaxone, the first year was daily and now I am on 40 mg, 3 times a week. It made a tremendous difference for me. Although the fatigue is what really gets to me. When I do too much, I do start to feel weak. My MS got significantly worse and unbearable Last year, a family friend told me about Organic Herbal clinic and their successful MS TREATMENT, I visited their website organicherbalclinic. c o m and ordered their MS Formula, i am happy to report the treatment effectively treated and reversed my Multiple Sclerosis(MS)), most of the symptoms stopped, I’m able to walk and eat well, sleep well and exercise regularly., I’m pretty active now and my attitude is extremely positive.
It’s so wonderful to hear that you have found something that helps so much with your MS. That fatigue is one thing that none of us seem to be able to escape! I also think it’s great to explore different options, both medicine wise and more natural ways. 🙂 Thank you for leaving such a positive and uplifting comment. xxx
I loved reading about Patrick’s life – thanks so much for sharing it Patrick! I was diagnosed the same year as you and had very much the same experience with the Neurologist – I changed pretty swiftly. I think that it is brilliant how your writing when otherwise you may have not. I try to look at my blog and the fact that I have taken up more ‘sedate’ activities as positive – I am learning new skills that I maybe would not have even ventured otherwise. All the best xx
To me the secret is no to regret what i have lost but to celebrate what is now possible. I do try to maintain my level of ‘busy’ and learn new skills but MS has a sneaky habit of making that damn difficult
You really have the best attitude towards MS. Yes, MS can take so much from us, but it can also add to our life and I do know how insane that sounds! Through sharing on our blogs and getting to know others dealing with similar issues, we have the ability to make friends and help each other through numerous issues!
I think that’s such a good way of looking at it. Our new activities may be more ‘sedate’, but they’re skills we probably wouldn’t have learnt otherwise. 🙂 How are you doing Jen? Are you still feeling a little better? 🙂 xxx
Hi, sorry I haven’t replied to this. I am feeling a lot better, it looks like I might be out within the next couple of days 😀 Just waiting on some blood test to come back that hopefully will look better – They’ve been worried about my liver function tests but I’ve stopped some medicine so hopefully that will help. How are you? Xxx
That’s so exciting! I was expecting you to be in for much longer. Do you have a day yet for when you will be able to go home? 🙂 xxx
Thank you for sharing your story Patrick. My sister works for the MS Society here in Ireland and I met a lot of people with MS in Scotland when I worked as a natural health therapist from 1988 until I moved to Ireland in 1999. Hyperbaric oxygen treatments were available in Edinburgh in those days, and nutritional help was in its infancy.
Heather, whilst do not have MS have a very similar condition called FMS plus that has been an equally long journey, too!! Neurologist thought had MS as had symptoms yet sometimes people with FMS have very similar symptoms which do until this day especially with my balance. Was in my early twenties (23)when my chronic pain journey with FMS began- now am 45. Was a while until diagnosed at the age of 29. When in hospital it was tough in some ways as everyone in my ward were health before needing certain surgeries plus were super quick to recover plus their pain levels quickly became lower than my base level of pains that normally have even before my recent complications! Some doctors were very empathic to how the FMS was making my pains higher plus making recovery slower, others had to educate ;-)! Honestly think FMS patients have more in common with MS than not in common, too, though hope we get the same respect in medical community one day, truly! Namaste, warmest wishes Clara
It’s so true, and so many chronic illness conditions have so much in common. You don’t realise until you start to learn about them. x I hope you are keeping warm this week. We had our first proper snow fall last night, and it is freezing out! xxx
Thank you Heather and Patrick for sharing your story. MS is definitely not a fun ride, but as you already know Patrick we do the best we can. It is great that you are able to be part of Heather and DIzzy’s life because they are both so inspirational and incredibly helpful. I honestly look forward to being able to read more of what you share Patrick.
After an MRI, i was diagnosed of MULTIPLE SCLEROSIS. After years on medications, symptoms worsened with tremors on my right hand, numbness and tingling, muscle weakness and loss of speech. Fortunately last year, i learnt about RICH HERBS FOUNDATION and their successful Multiple Sclerosis alternative treatment (ww w. richherbsfoundation. com), the Multiple Sclerosis treatment made a great difference, most of my symptoms including tremors, weakness and others gradually disappeared. I improved greatly over the 6 months treatment, its been a years since the treatment, i have no symptoms. I have a very good quality of life and a great family!
That’s so wonderful that you have found something which works so well for you. And I think it is great to look into different approaching to managing MS and it’s symptoms. Thank you so much for sharing the link. 🙂 xxx
After bouts with many neurologists I was diagnosed of MULTIPLE SCLEROSIS, I was placed on medications which helped but my health was fast declining. Finally, I was introduced to Herbal HealthPoint and their effective Multiple Sclerosis protocol. This protocol relieved symptoms significantly, even better than the medications I was given. Visit ww w. herbalhealthpoint. c om. First month on treatment, my tremors mysterious stopped, had improvement walking. After I completed the treatment, all symptoms were gone. I live a more productive life.