Hello all, I am new to this site. I think I need some support which is difficult right now. Who else is finding lock down strangely familiar to dealing with a very long stint ms symptoms or relapse? i still feel fortunate in some ways I do alright and i know this can daily life for some. I was managing my ms and my mental health quite well through even through all the change and distress covid has brought. Now I am seeing people I know going through what many with long-term health conditions face on a regular basis. It has really hit home this past week. I lost my job, which I believe is part of this as it was keeping me busy. My ms flared up the end of last year but I was managing. Now my mental health is taking a thrashing. The increase in uncertainty is doing my head in. My friends don’t understand me and my ms as I find it difficult talking about things with them. My usual ms buddies are in Scotland where I was living before I had to head back to the parents 5 years back as I needed more support. Watching others who seemed to have life pretty much figured out go through things I have been dealing with for years is scary and horrible. Hoping to connect with some folks out there who understand. Many thanks.
Hi Northwestjim,
these restrictions because of covid are just a glimpse of the restrictions that MS has placed on us.
It must have been difficult having to leave Scotland.
I see people who have never understood MS struggling with uncertainty. That is what us with MS have had to struggle with since diagnosis. Maybe it has been a practice run for Covid?
How has the move been for you Jim?
Whereabouts are you living now?
keep safe and well
(Northwest) Carole xx
i am PPMS. havent been out really since last march. just been difficult as so many things with restrictions i gave up.
I have a new bungalow i moved into and a lovely patio area its communial garden but we can do our own bits. I have birds visit me everyday and feed them and the hedgehogs at night and use a wild life camera.
Yes things are different with covid but made so much worse. I cant see ANYONE, not even a GP. I havent been feeling well for weeks. keep having weird episodes finally they are doing bloods to check me out concentrating on glucose. I have become my own health advocate. I have an array of tools. DIP STICKS for URINE (my MS NURSE thought it was a good idea), i eat healthy, got oxymeter, BP machine you name it i have it lol.
I need a repair the rigmarol you have to go through to get one. #
Yesterday my daughter came to check on me she is a domicilary care worker. Knock on door it was the lady from across the way. she just come out of hospital. she was in a right two and eighth, could barely walk, my daughter dealt with it. she had been let out of hospital with no care package, she had no credit on her phone so tried to go to the shop and fell.
in the end my daughter got the first responder out to check on her. we had no idea who to ring, i live shetered we dont have a care worker on site.
so many older people sick and vulnerable ill with little help all down to covid.
my daughter wouldnt even go in this ladys place until she suited and booted with all her PPE.
COVID is depressing me not being on my own. It is depressing me because still people are not taking it seriously enough and even here they stand about in the corridor talking to each other no masks on.
I am struggling with my mental health at the moment. down to stress of ignorance of the population of the world.
how hard is it to just do as we are asked. instead of which because we cant, the lockdowns stay longer.
The MEDIA make it worse too. so many lies and untruths. they breed the conspiracy theorists.
I wish i had my mum and dad, i have no one i live on my own with my dog.
I ring my daughter up in the morning get told i will call you back after my programme is over mum.
its my mums 5 year anniversary today she left us this day 2016. I wish i had gone with her. I lost my husband 2017 i was left on my own.
all i can do now is ride this out. but some days i feel like seriously really. I am now helping with the sheltered newsletter designed it and a new name, i am trying to find ways to get around all this.
but if i hear one more phone message about beeping covid delays i will throw my phone out the window lol.
when you see all the people walking about and my daughter tells me supermarkets are full of families shopping with children what is the point to it all.
Hi Caroline, thanks for the message. Hope you are coping with the added turmoil to our lives. I agree wholeheartedly it sure does feel like ms and its toils helped prepare me for this pandemic. I haven’t been as concerned as some I know. I also started following overcoming ms protocol and some of the stuff I do especially vitamin d supplementation is supposedly good for boosted protection against covid. So in some ways the move has been very very positive. On the down side, another failed relationship just before covid has been more troubling for me. Seems I need to deal more with my ms and the situation I have found myself. I am almost 38 and the last 10 years have been a blurr. Going to give councilling another go. Do you happen to know of any good councillors in the northwest. I am fortunate and can get around so traveling isn’t so much of an issue. Currently living back with my parents for now, on the northern border of Lancashire just outside Kirkby Lonsdale. Where are you? I have been moving about the northwest since I moved back, can’t seem to settle, I have been trying to figure this ms beast out so I can actually live a bit more if you get what I mean. Currently trying to decide whether of not to go back on treatment or not. I was on tysabri for 7 years till a virus and its possible effects made continuing treatment scare the hell out of me so I stopped. Are you on any medications for your ms? Thanks for the reply and stay safe too!
Hello Crazy Chick, thanks for your reply. I am currently and fingers crossed will stay rrms.
I am fortunate that disability is still kept at bay, though mentally I struggle. I love anything from nature, when I can move to my own place I will put my gardening skill to work. My friend in Scotland is the same. We sat watching birds at his bird feeders and the squirrels for ages.
I came off of my treatment due to my risk of a severe brain disease which mentally on top of ms I couldn’t handle. I count my self lucky to of gotten on to tysabri so early after diagnosis. I have been managing my ms naturally for a few years now. Have you heard of overcoming ms protocol?
I follow this so I too am now more used to being my own health advocate as you are. It brings with it a feeling of positivity. My gp is on board but the neurologist not so much. I would highly recommend looking at the overcoming ms protocol by Dr George Jellinek, takes time to get used to the changes but I found I am used to more of that with ms. It involves a seven step evidence based program developed by a neurologist Dr Jellinek who got ms. I have never felt better since starting following it, and my last ms nurse said she followed it (minus the drug therapy) because it is just a really health way to live. You do have to get used to eating vegan, but that has the added bonus of feeling like you are doing you but to save the planet too.
There are also groups called oms circles which hopefully are local to help provide more support. Where are you in the uk? I have a charity called the Neuro degenerative clinic near me who organised lots of things for people with a range of brain condtions. It is worth looking around as they are currently all doing stuff via the internet due to covid. Adds a bit of positivity for you.
I get what you mean about people not being responsible and ignoring covid guidelines. I help at my local food bank and got a job through them just before covid. I was helping get food to the vunerable self isolating. When collecting from our donation points in supermarkets I was astounded at how many were not keeping their distance and not wearing masks. It was worse in the begining. I have seen the worst of it I suppose.
I am sorry to hear about your family losses. I do feel very fortunate to have my parents. It does get to me that I wasn’t there enough to spend more time with my grandparents as they lived 500 miles away in Cornwall. Life lesson learnt but one I still need to work on with my family and friends. Ms does interfere and make things so awkward for us.
There are always reasons to carry on if you look for them, be open and ask for help. I was very bad at this however I am slowly getting the hang of being more open with the right people.
Another side to overcoming ms is the meditation and mindfullness , this has helped me with managing my stress better and become more resilient. I think adding as many positive things to my life has helped offset all the negative that ms files out on a daily basis. That and some of the people we have to deal with in this world.
Keep you head up, you have got this, stay strong!
Hi again Jim
I like the OMS philosophy.
Isn’t it great that the book is offered free of charge, nice one Mr Jelinek!
I am a big advocate of mindfulness meditation myself. I went on a course at the MS Therapy Centre,
I used to be a regular at the MS Therapy Centre at Trafford Park.
Fantastic place and they offered all kinds of therapy maybe even counselling (I haven’t been for well over a year) so don’t have up to date info on what is offered right now.
I can let you have their phone number (removed by moderator). My full name is Carole Morris and I used to arrive with Mick Wood. They won’t know me as CatwomanCarole58.
Good luck Jim xx
Hi Northwestjim,
What’s the best way to contact the nearest OMScircle? Looks like there is one near us in Scotland. My OH has MS and I know he is lonely because of it. He has tried attending MS groups before but felt out of place as a young guy in a predominantly (older) ladies group. I would love for him to get out more, meet new people etc. Would be grateful for any advice…
The Wife
I totally understand how you feel. I have SPMS and Bi-Polar. People are it all the same