my name is Alexander and about for years ago I was diagnosed with MS. At first I lived on as if nothing had changed, but as time passed I can’t ignore the disease anymore. I’ve stopped working for almost half a year now and I realise that my comeback will probably never happen. I worked independently as an editor and cameraman for over 10 years and loved my job. I have two kids now (2 and 4) and the energy I still have left is just for them, but now I feel that I still need something for myself to. So I thought long and hard how I can still make a difference and how my situation could maybe make a difference for other people in the same situation, however small it might be. Because of this my new goal in life is that I want to, and hope to, be a little positive light in the lives of fellow MS patients. Especially these last months I feel how easy it is to get kind of depressed and feel sorry for myself. I truly believe that this has a negative impact on the MS and therefor I have come up with the idea of “The Silver Lining”. Instead of lying on my couch every moment the kids aren’t home I go looking for what I can do now that I wouldn’t have been able to do if I was still working. I have been doing this for a while now, and I feel much better now than when I was living “the couch potato” lifestyle.
So “The Silver Lining” is all about looking for these little things that are fun, useful, new and make not only my life better but also have a positive effect on the lives of the people around me. I have filmed myself these last few weeks doing this and put it in a vlog. The first reason why I started filming is that I don’t know what the future will bring and that I wanted something for my girls, so they could see how I was in case I get a lot worse before they are older and really understand what is happening to me. It has taken me a little longer than I hoped it would but I have put the first few episodes online, on youtube on following link: https://www.youtube.com/channel/UCR0m0da7tGP_qn-dnRr6SkA?view_as=subscriber
If you know what is is like to live like this and be tired al the time, than I hope this vlog can help you to search for this Silver Lining to and hopefully you can feel the positive effect that is has om me to. So take a look and hopefully it can help you to.
Cheers,
Alexander
Fantastic idea, Alexander! I’ve just watched your first video, and your courage and determination do you proud. I’m sure that your family will treasure all your videos forever. You are an inspiration to us all.
Brilliant. I loved it, made me chuckle about the errrr little round things when you fell off the bike lol. You have a great way of presenting and make it interesting but also fun. I did laugh a lot with the socks as i was doing that myself the other day. I find its better to do a little thing every day then try to do one big thing. I am 68 now well nearly and yes i get fatigue but mine is more later when my battery has wound down. I think the idea of the videos for your daughters is fab idea. I am grateful you are sharing it with us. as to fatigue and breathlessness, diet is very important. try and cut out sugar, gluten, and i drink Koko milk which is fortified with b12 and vitamin D. by doing this my levels increased and i managed to do more. I have primary progressive MS and my issues are mobility. Just trying to walk a few yards is exhausting but like you i am trying. everyday now i force myself to walk to our rubbish area and chuck out recycling. i used to leave it to my carer but i decided it was an opportunity for me to walk and also perhaps to bump into other residents and talk and also my dog got to go out the front of the building where it is blissfully cool. I am less on my couch now which is all good. but jeez at night in bed my legs are crazy. I lost sight in 2000 long story too boring but i recovered, and you should recover and hopefully the blurry vision will get better, just drink a lot of cool water. when you go for your cycle ride where a cooling vest it all helps. also naughty you must wear a helmet. Can i also warn you of another danger riding in the woods. TICKS. If you are falling into the grass they are everywhere so check yourself ok, they can hide in some really weird areas lol. can you not go on disease modifying drugs as you are only just diagnosed well recently it could help you. I feel you could still do things with your talent. perhaps working with a youth project who want to learn media perhaps? i loved your visuals in the videos really clever. Yes the silver lining for me was when i finally got sick i couldnt get out of bed to work, i used to teach I.T and anyway was rushing around like a looney. I had to slow right down to a crawling pace, which probably saved me from a stroke, as at the time my blood pressure was 220/120 most days lol. Now most days its normal. Yes stress is a real pain. It makes me feel worse. but yes there is always a silver lining in life and you have been given a chance to be more at one with your children and they will thrive with that. I am going to share this with my MS friends on groups hope that is ok. Looking forward to next episode. Its up beat and not boring and makes having MS less scary. Thank you for that. Ciao.
PS. The visual with the water and pee was just spot on. I am going through this stage again at the moment. I can take ages to get going and when i do it takes ages and ages to empty my bladder. I hate it i think my bladder is one of my worst issues with MS. thanks though as it was spot on.
The videos are comforting to watch and it makes me feel supported. I only been diagnosed for a few months and I am still trying to deal with the news. I am not feeling strong enough to share too much with friends and family yet, so thank you for your information, humour and support.
Lovely idea. Have you thought about trying swimming? or tai chi? you look the kind of guy who is fit anyway, but swimming might be okay cuz its temperature remains the same and you can go slow. Tai chi is good for balance. Again not full on cardio so no overheating. You should be able to find a class at aome convenient part of the day. Also good to get out, even if its a walk to the park with the kids. Or without them even!
Thank you all for these beautiful replies. I kind of forgot I posted this here and this is the first time I read these replies, but it means a lot to me. I hope your still following the vlog ! Don’t hesitate to comment, cause it really makes me happy to read what you all wrote. I hope to hear from you again, cause replies like these give me the energy to keep doing this ! Lots of love ! Alexander
Hi Alexander, Really enjoyed the 1st episode, I will watch some more, when I’m not so tired. Really lovely idea, hopefully when we watch, we too will get more motivated, well done.
so Alexander, I’ve watched about 6 episodes and I so want to buy you some right tools to get you garden job done. 10 out of 10 for perserverence, I admire you, Jean x