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…..