Filling the hours with love

It is going to be a strange day today as Adam is just getting ready to go out for the day, but I doubt he will be back until well after I have gone to bed. With it being Mothers day he and his sister are going to spend the day with their Mum who lives a hours bus journey away. I can’t remember the last time I spent a whole evening alone, it is going to be a bit strange I expect. Being left out of things is clearly one of those things that happens when you are housebound, life does go on without you. I know for some people that can be really hard, but you can’t expect everything to end just because you can’t join in, and every family gathering can’t be held here either. To be really honest that would drive me mad, the hassle of having people in the house for an extended length of time, is exhausting and you really can’t just vanish to bed, even if you do, well you can still hear them all. For me Adam going off and spending time with his family is the easiest and most MS friendly option.

You do strangely get used to your own company, I suppose I had advanced training in that one, having been a Navy wife, well I was used to having months at a time of evening on my own. I have never been what you would call a highly social creature, I never quite got the party thing, or going in huge groups to do things. To me I would rather spend time with just one or two people at a time, I can’t help wondering now if that is because of my MS, as I wrote the other day, conversations get confusing, too many people talking and I get totally lost, just smiling and nodding, with no idea what I just gave my agreement to. There are so many things in my life like that, when I look back adding in the problems that my MS were causing, which at that time I didn’t know I actually had, and there is a completely different light on the whole thing. But I am sure all of us with long undiagnosed conditions will be able to say that, when you are ill, you deal with everything differently.

I can see with ease why so many chronically ill people become isolated by a strange twisted choice, the worse your illness gets, the harder dealing with people becomes. If you think about it if you have had a really bad illness or even the flue, the last thing you really want is crowd of people around you. Well a chronic illness is really no different in that feeling. We don’t want to never see anyone ever again, but it is just so exhausting maintaining contact, that we slowly stop trying to. And because our friends slowly find it harder and harder for them to see us, they slowly stop trying and disappear. You can’t put the blame on either side, it is just the way life is and it is almost unavoidable, it takes a really special friend to persevere and not let that separation happen. In my heart my old friends are still there, even thought I know I will never see any of them again, I actually haven’t made that disconnection inside myself, as I didn’t want things to happen this way. I quite simply don’t have the energy to track them all down and say hello, nor do I want to actually have to say good bye again.

As all of you know by now I am content in my isolation, I know that is what it is, yet I have never found myself feeling lonely. I think I also know why that is, it is because I feel loved. As long as you know that there are people who love you, regardless of when you last spoke to them, or saw them, you aren’t alone. I don’t think that that last sentence reads with the strength that it is felt, but the truth is in there. It doesn’t matter how long ago the love comes from either, I think we all have sat and thought back through the friendships and relationships we have had through out our lives, and if you smile and feel happiness from those thoughts, well you know with certainty that those very people will also from time to time remember you in the same way. The older you get the more of those moments their are, add on to that the relationships you have now and how can you ever feel lonely. At this moment some of you will agree with me and some will think I am a nutter, well either way, it works for me, and it keeps me happy. I was loved, I am loved and nothing, not even my health can take that away.

Finding the path to content.

There are days when the world seems a bigger and brighter place. No I’m not trying to be sweet or cutesy, but those days when for no reason there is a general good feeling about the new day. Being ill doesn’t mean you have to be depressed and or depressive. I can see how some people get drawn down and find themselves drowning in pain, grief and self pity, I am not saying any of that in a nasty way, just as a fact. I like all others, went through spells of all those feelings before I found my own understanding of my illness. I really think it is unfortunate that there is no way of stopping people from reading everything they can about what they believe their illness is until you have a full diagnosis, naturally we all would have questions, but all that is achieved by reading, is panic and fear. Once you have a name and a basic understanding from the doctors, then is the time to start learning, you can them find the facts without mentally adding in thing that are not relevant.

I am not sure when my attitude changed towards having MS and accepting it, acceptance is vital, until I accepted what I had, and what was ahead I couldn’t move forward with the rest of my life. I think that acceptance started when I gave in and started using my wheelchair. When sat in it there was no way of denying I was ill to myself or any that saw me. That along with the report from the psychiatrist that there was clear cognitive problems and damage to my frontal lobe, pushed me to start find the way through it all. Working with my MS rather than against it, I suddenly found that it actually wasn’t the end of life and I just had to put in the effort needed to plan out how to deal with what I couldn’t now escape.

I know it sounds odd to others but I have to say becoming housebound in a way was a blessing. Without the pressure and stress of the outside world I found peace, a peace I didn’t realise I needed. The space, calmness and quite, has brought out a less stressed and nicer person, without other people pushing and demanding things of me, I can actually be me. To anyone reading this I would actual recommend that if they have holiday time available to take two weeks, to just stay at home, I do mean at home no shopping, going to friends, just stay at home. It is more relaxing than any holiday abroad or anywhere else. Tell everyone you are abroad, so there are no phone calls or internet contact, make your home a retreat and relax.

I don’t like the word content, as that sounds to simple and wishy-washy but there isn’t another word for it. Today the world looks a brighter place, because I am content.