A plus plus day

I have always been proud of the fact that I am Scottish and for some reason never happier than when in my own country, today I am overjoyed that I also live in Glasgow. The why is a simple one, the temperature. Glasgow has as it almost always does, side slipped the worst and/or best of the weather. With the rest of the country having warnings about high temperatures, we have just touched into the low 20’s, more than hot enough for those of us with MS. Glasgow seems to have it’s own weather, it doesn’t matter if it is summer or winter, the weather here is always different from even those just a few miles from us. I still find it hard to accept that I have lived here for over 25 years, as I was so reluctant to move to the Scottish west coast when my first husband informed me we were leaving Plymouth, the only place outside Scotland that I ever fell in love with. A handful of years later and I was single and moving voluntarily to Glasgow, a city I didn’t know at all. If anyone was to ask me how I would describe the weather in Glasgow, I would have to say it is bland. We don’t get the great snow they do just 20 miles away in the winter and the sunshine in the summer somehow is never as hot either, but I eventually did fall in love with my adopted city, even though most Glaswegian’s constantly accused me of being English, not my fault, just down to my Scottish east coast education. I doubt there is actually a better place in Scotland as far as the weather goes for someone with MS to live. None of us seems to do well when we are forced into the extremes, something that I personally haven’t put to the test since my diagnosis. Yes, we have gone through spells of weather that have knocked me flat but they never last too long.

Adam was off work yesterday as we were expecting a delivery of something that I was quite clearly not going to be able to help the driver deliver to us, a new mattress. When we bought this house money was tight and we bought a bed that we liked the look off but was cheap. I knew that meant that the mattress wasn’t going to be the best, but it really wasn’t bad. With the addition of a pressure mattress a few years ago and all the toppers that I added to make it more comfortable it continued to serve us well, but in the last couple of years I kept waking with a sore back and I knew why. After 14 years of use, the mattress had developed dips and it didn’t matter any longer how we flipped it or turned it, there was a permanent dip on every face. Those dips didn’t just leave me with a sore back in the morning, they also made it really hard to get out of bed, it had to go. I know that I have just spent one night on it, but if anyone out there is thinking their mattress is past it’s best, well don’t think about it a second longer, get a new one. The new mattress is a lot deeper than the old one, so for the first time I don’t have to drop down onto the bed, the bed is at the perfect level to just lean slightly and I am sitting on it. Lying on it was like lying on a cloud in comparison, firm but supportive where needed and getting up, no problem, half the battle I had with getting up was the pain in my back, a pain that I didn’t have this morning. The extra bonus is in the fact that I can no longer feel Adam using it as a trampoline, he can bounce all he likes, my side stays unaffected, it has to be our purchase of the year.

When I finished my blog yesterday I actually decided to talk to Adam about it as he was here and he said that he would make the calls for me and see what happened. We were both ready for them to say that they had to speak to me and I was ready to tell them that Adam had my permission to make the call for me. To both of our surprise, neither ask, they were quite happy to take instruction from him, even though it was my medications that the calls were about. I have to say that I was shocked that neither needed to know anything other than that he said he was my husband, to talk about my medications. He could have been anyone, but they accepted what he said on face value. Mind you, neither of them have what you might call a vetting system for anyone, unlike when you call the bank and they require passwords and so on, but it still felt lax in a way. The chemist was quite happy to accept that I couldn’t bear the taste of the new amitriptyline, something that I also thought might be a struggle as these days they buy the cheapest so that they can make money. I am really glad that both calls went exactly as I had hoped, it is one less thing that I need to worry about going forward as I can at least hand those administrative type of call to Adam.

When he came off the phone I thanked him for making them for me, as always he said there was nothing to thank me for, it’s part of his role to do what I can’t with ease, but I doubt that I will ever stop saying thank you. It is still something I find hard, asking Adam to do things for just isn’t getting any easier. I know that he will never say no, but willing or not, it feels like I am putting onto him more and more almost daily. Going from independent to reliant is a very hard road to walk along. We all think that we will never need anyone’s help with anything, that we will always be able to do everything for ourselves, especially silly things as small as making a phone call. I have been winding myself up about making those calls for days, pushing it further and further away from myself in some sort of mad game that might mean that they would just fix themselves. Adam has always made it clear that he will do anything that is going to make my life easier, but I honestly didn’t think that this was something he could do for me. I suppose I have to admit that I am at that point where I am better at making myself wound up and under pressure than I am at asking for the help that is right here. You would think that the care he showed for me when I was too ill to even walk anywhere by myself, that I would have learnt, but it appears I still haven’t. Those two calls though have shown me something, it is always worth a try. If I don’t feel able to do something, even something I believe I am the only one that can, it’s worth Adam at least trying as you never know what response you will get.

Read my blog from 2 years ago today – 1/07/13 – Erratic control….freaky

Adam is on holiday this week so even though he has started and not finished loads of little jobs over the past couple of days, he is now in his normal holiday position, snoring on the settee. I guess he will as always sleep through the daylight and work on until dark, for someone who complains constantly about not liking dark evening, he doesn’t exactly make the most of the long awaited summers and it’s constant……

Setting up the future

I have just been forced out of routine thanks to the internet. There is a site I use in the morning that is one of the many sites that offer different ways of seeing and managing twitter, but it isn’t working at the moment, so here I am 40 minutes ahead of my norm and now guaranteed to be totally lost and confused for the rest of the day. It’s maddening when things that are totally out of your control just take your life and throw it up in the air, leaving you lost and confused, but I am sure that even those without any illness feel something similar, just not with the screaming in the back of their minds saying that the world has just ended and it will never be the same again. It also means that every few seconds I have to go to that tab and just try once more to refresh the page in the hope that this time might be the time that it normality returns. Rather than just leaving it alone until I have completed this, no that would be far too easy for a brain like mine, it has to ensure that I remain in a constant start of panic and unable to just move on and accept it as it is.

I had a tweet yesterday and a comment to on one of my posts, that both had something in common, both were from people who live alone and have little to no support when it comes to dealing with not just their illness, but life. I have at different points in my life been totally alone, yes there were people on the end of a phone if I needed to talk to someone, but there were two problems with that, firstly I couldn’t afford the cost of the call and I didn’t want to even admit that I wasn’t coping with life the way it was. I was lucky in one respect, I was still able to get out and about so I at least could see that life was going on, even though I wasn’t part of it. I don’t remember feeling lonely, but I do remember feeling totally alone, they are two very different things, especially when it comes to trying to deal with poor health. At the time I am thinking of, I was still in the reasonably early stages with my MS, it was still relapse remitting and although I do remember a flare at that time, it wasn’t debilitating to the point that I couldn’t manage to care for myself, but I do remember what it is like feeling like the world has forgotten you. It’s probably one of those things that goes back to childhood, but the one thing we all look for when feeling ill is to have someone there just to take care of us, fetch us a hot drink and tell us it will be OK, that doesn’t change with age.

When you find yourself dealing with a serious chronic condition that changes life forever, it doesn’t matter how many people you have around you, you can still feel totally alone. Most of us don’t actually know anyone who are living with the same condition as us, or are having to deal with the same issues when we are first diagnosed, the world can suddenly become a really strange place where we feel we are the only person alive who has to deal with anything like this. The only time we ever come across other is when we are waiting to see our consultants, but there is a strange thing about hospital waiting rooms, they are like libraries, everyone sits there in silence. At that early stage is we seek out other, we join chat rooms, attend meetings of the local support groups and for some that works, for others it is just not right for them, that was the group I fell into. The odd thing is, the worse our health gets, the less and less support there is out there for anyone, we once more find ourselves alone, with no one to turn to, who shares our predicament and we enter the zone of invisibility. It is a truly tough one to get around, as I know myself there is for some reason in all of us a need to be part of a group who share our lifestyles, but when our health is restricting our ability to be in contact, it actually means that others need to contact us, but no one knows we are there. All those groups and chat rooms are still out there, but when you are too exhausted, or the pain is too much to even type, you truly become alone in a way that I never thought was possible. So far I am lucky I have only touched the surface, but there have been both tweets and the comments over the last couple of years that have showen me just how easily and quickly it happens.

The conditions we have don’t really matter, the truth is one I latched onto before I started my blog or twitter, it is our symptoms and the issues they cause in our life that really matters and what we all need to know is that others have them too. It would be nice if someone had the cure for them, but I often think that if not the cure but a good placebo, is the knowledge that we are not alone, that someone somewhere understands and hasn’t fallen over dead within hours of it appearing or due to it. I don’t know if it is just the UK that has this strange thing going on where the majority of people who have chronic conditions don’t tell anyone about it. I know that in my working career that I never once heard anyone saying they had anything worse than asthma or arthritis, despite the fact that there must have been people who had a huge range of condition. I have said it several times and I will say again in the future I am sure, but if we just talked freely about our health, it would break down so many myths and falsehoods but just as importantly, those who will follow us, would already be aware of others and that feeling of being the only one on the planet would be broken down, at least in the early phases if not the later ones.

After my post yesterday I decided to see if I could find out how many people in the UK have certain conditions, I started with MS and the figure give was around 100,000, fibro 800,000, arthritis 8 million and COPD 3 million. I looked at only four conditions and the numbers alone started to prove my point, as those conditions alone represent over 5% of the UK population, worldwide 15% are disabled. The more conditions you check, the more it becomes clear that we are part of the kind of numbers that shouldn’t be ignore by anyone and whether it is in line with yesterday’s topic or today’s, if we all just made our voices heard, life could be very different and so much better, for everyone who is ill now or will be joining us in the future. Some issues are harder than others to resolve, in the UK right now there is a charity that is set up to help to break down the feeling of loneliness that the elderly go through once they are either housebound or simply no longer have the daily contact with others. It is a free phone number that they can call day or night just to have a chat, not because they are suicidal or in need of medical care, just to have a chat. It doesn’t matter if they see their families every day or every week if they feel lonely there is someone on the other end of the line happy to talk. One of the services it offers is a calling system, where their number is on a list to be called once or twice a week, one of the volunteers will call them just to see how things are and to talk about everything and anything. I can see how a similar system could be useful for all those people out there who feel alone with their failing health, setting up phone buddies, where people could be matched up to support each other through the difficult spells, were doctors aren’t what we need, just someone who understands because they too are dealing with the same thing.

 

Please read my blog from 2 years ago today – 25/10/12 – Being Totally Alone 

This is a day that is going to be dominated by my legs, they have been screaming at me since I first woke. It is almost impossible without lying down to actually remove all weight from them, it doesn’t matter how I sit the pressure builds in my thighs and joins itself to my shins and calf’s. I have joked over the years with Adam about wanting new or no legs in preference to the ones I have, this is…..