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January a new Year


After the long flight and car journey home I was knackered, even though I’d never admit it; my legs weren’t going in the direction I wanted them to and I felt completely exhausted. I realise that jet lag and MS are not the best mix but I generally don’t suffer with jet lag and I now recognise this was my body telling me to rest as this bloody MS was getting the better of me. I knew I’d overdone the travelling - 26 hours in total, including a connection in Charlotte NC. I had the advantage of assisted flying, which in the early stages of MS I was embarrassed to use but now I can’t travel without as the long walks to a flight, and the faffing about embarking and disembarking literally take its toll on my body so getting all the help I need is a delightful necessity and actually allows me to take these trips. So back home I’m ready to sit and relax for as long as needed to re-charge my batteries.

As I’m unpacking I can’t help but smile at the thought of my mate cursing me for taking all these clothes; in truth I didn’t wear most of them but how was I to know whether or not the extra three pairs of shoes, three pairs of trousers or seven shirts would be called upon! After sorting my clothes out I took a proper look around my newly decorated bungalow. My brother, sisters and mother had all asked what I wanted for my 60th Birthday and when I told them I didn’t need anything they kindly decided to replace my living area carpet so that when I take the electronics off my leg I won’t trip as my foot drags and ruffles up the carpet. So to stop me falling over all the time they clubbed together and replaced the flooring. Mother and one of my sisters had done a total makeover; not just the new floor in the living room but also new wallpaper, curtains and bed spread in the bedroom. And it didn’t stop there - as I looked around I noticed a new microwave and washing up bowl too. They really had done a lot and the place was so clean. I am one lucky guy. I can’t describe what a truly wonderful homecoming it was or how much I appreciate all my family.

I sat down with a much needed cup of tea and my thoughts went straight back to the friends I’d just left behind; such warm, kind and basically good people and Sarasota, the place I call home, and how in a heartbeat this illness ended it all, and yes I suppose I felt down and a little emotional. There was so much I’d been looking forward to and planned during my stay and those three weeks had bought a lot of memories back. I was deliberately careful to not see anyone for too long as the emotions would come flooding back and upset me. I had had some close friends – but apart from my dear friend who looked after me and who I speak to regularly on Skype, there are others who I now hear from so irregularly I thought it best to keep my visits to a minimum to protect myself; it’s sad in a way as I know life moves on and I’ve struggled to accept that. The one person I secretly longed to see lived up to my hopes and we spent some quality time together - nothing too dramatic, just a lovely, closeness that we shared before. This special lady really is a dream and looked so well which was a comfort to me and I doubt that I’ll ever stop loving her … oops here I am again getting heavy, emotional and rambling.

Before I continue I want to point something out that I have mentioned before but want to say again. I write as I’m thinking and the MS makes my right hand really slow so my thought race away and I can’t keep up with them, making typing a problem in as much as it often doesn’t make good sense so (and I accept some people may find this strange), my ex-wife proof reads this blog, making corrections and additions which takes her ages - I hear giggling and cussing at my awful grammar and frequently get asked exactly what it is I’m trying to say! I suppose it shows how strong we both are as she feels my sadness and frustrations - and indeed reads them before anyone else and I’m sure given the choice, she’d rather be watching Nigella Lawson rather than spend time re-writing my thoughts! Anyway I know she understands how grateful I am and how much I appreciate her time and help which I pay for in chocolate and cups of peppermint tea.

Moving on, I spent a whole day just sitting in my chair, too weak to move after coming back home from the States. Thankfully my sister had brought milk and food in for me which was great. It all helps me to rest up and feel well enough to visit a friend who has been very ill - I mentioned him before I left for America. He’s in hospital some distance from me so I set off and traveled a fair distance when I needed to stop for a nap as I was getting a little tired. I really was struggling but I needed to see him. I eventually got there and I was pleased that he appeared well so my visit was well worth the effort. This guy is a star; he’s been through a lot and still has a way to go so I think the least I can do is I try and make a weekly trip to cheer him up as he regularly came down to see me when I couldn’t get out.

In the end I spent almost four days feeling slow and unsteady, doing very little and then to cap it all I twisted and put my back out getting out of the shower. I was so frustrated as I couldn’t move and I was expecting a friend to visit who I hadn’t seen since before Christmas. As it happened she cancelled which was a blessing, but boy it’s hard work when you’re slow and in pain. I’m fortunate that I do have people popping in; neighbours, my ex and my sister so I’m never short of a cup of tea and the odd dinner. I say odd – I love lots of things till I’m told what’s hiding in it, like avocado or sweet potato! Anyway luckily I was still able to fetch mother over for our Friday Bingo which meant I would be able to drive up to see my mate again. I took another great friend along with me for (good) company! Of course we had to stop for her much-needed caffeine fix and also for a crafty stop at McDonalds so we could join our friend with a burger while he had his hospital food and also because he’d been craving for strawberry milkshake so his desire was met! We spent a good couple of hours, laughing and talking about his situation - something I’m not comfortable with when talking about mine. Anyway I hope that the following week we’ll see some changes for the better

I know I sometimes skim over my illness partly as a defense mechanism and also because I don’t want to worry those around me but since coming home I seem to have more issues. The problem with my back hasn’t helped and moving first thing in the morning is harder. I try to exercise and stretch at the start of the day but my body just doesn’t want to move so I lie on the floor and feel like a dead weight then my head starts spinning and aching. I know not to overdo things but I feel I should do something and at the back of my mind is the eventuality of having to look at new MS drugs. I ‘m due CT and MRI scans later in the month and with the recent blood tests, we’ll see. I have a book on my desk about Disease Modifying Drugs and MS but amazingly, I can’t bring myself to read it. I guess part of me feels better not knowing – and I don’t mean I’m in denial but sometimes its worse reading too much – it can be depressing and I’m comfortable having some understanding of this illness but a side of me is still full of anger and frustration.

Having just returned from a place and people I love and not working or earning, I’m dependent on others which is so different to how I’ve always lived my life where I was the one helping others and providing. I suppose I’m trying to beat this illness and at the same time acknowledging that even just walking in the way I used to is no longer a possibility; simple days out are not that simple anymore and everything has to be planned ahead making allowances for the limitations that before MS I never had. I can no longer be spontaneous like I used to be – deciding on a whim to drive down to Bournemouth to watch fireworks at night then driving home again – or nipping to the seaside for a picnic just because I felt like it. I know this was exciting for the people around me too and now I suppose my mind is so mixed up that it feels like I take three steps forward and get knocked back five. This illness has quite literally knocked me off my feet. When I was away I remembered what was and what I could have had and now I live in hope of getting somewhere near to that. Yes I laugh and put a happy face on but I feel fatter, out of condition and lonely, now, you didn’t expect that did you?!

2019 I intend to cover more about MS and how it affects me and try to give the readers who take the time to read this a better understanding of MS to realise there are many levels of this awful disease and people can react differently. When talking about it I hear so many times, “I know someone with MS”, “my Aunty has MS” and “it just gives you the odd day in bed”, because trust me, no one really knows the true affect that it gives someone which is why I originally decided to write this blog - yes to make you smile but also to express there are times of sadness, but after all this we could become Neurotically gifted!!!

I managed to get to the park on a bloody cold day recently but seeing all the dogs was well worth getting my clean jeans dirty for!! It was great seeing a few friends, hearing all about their Christmas’s and giving them greater detail about my adventures over the pond. I really enjoy being outdoors in the fresh air and long for the better weather when I can sit in comfort and chat away for longer. It was back for the treat of Sunday dinner at my sisters, lamb and mint sauce; smashing! I always look forward to her Sunday roasts. Once back it was a relaxing afternoon before taking my car in tomorrow morning to have my tyre pressures checked. That meant an early start as I need a fully functional body which means getting up before six just in case I need those extra couple of hours to get myself going. All was well and I felt great, most importantly because the Neuralgia is now just the odd shooting pain and numbness in my tongue and bottom lip which these days’ counts as a result.

I went for CT and MRI scans which for some people is quite distressing, being enclosed in such a confined space but luckily I actually seem to accept it which is weird considering I’d never go pot holing because that would bother me. The noise of these machines is loud and the earplugs are helpful - after about twenty minutes I was pulled out and fluid was pumped into my veins (a weird feeling) then I was slid back in for what seemed ages. As per usual I wanted to scratch my nose and had the urge to break wind! I still have difficulty understanding why I get that particular urge whenever I’m in an enclosed place! The reason for the scans I believe is to see whether the anymore legions have appeared or any dramatic changes have taken place since the last time. We’ll find out in a couple of weeks when the results come back. I wanted to take a photograph of me entering the machine but the nurses were very protective of this and refused. Damn, I wanted to have a dramatic picture, like Bear Grylls, fearless as I enter the unknown, sporting my bright yellow underpants although that might have ruined the effect!

The cold weather is really slowing me down and stopped me from going for a haircut as it was minus 5 degrees and I was seized up. It even took me ages to eat my daily banana and Shreddies – yet another frustration but hey, life is good and February is here, so that’s January done and until February …….

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