A gentle wish

I guess today’s blog will have to be a little shorter than normal, as I mentioned yesterday my daughter and here husband will be here later today. Based on their normal timings when they have visited in the past, I don’t expect to see them much before 3pm, a combination of them being on holiday, hung over because they are staying with her brother and the fact they have a 45 minute train journey, then a bus across Glasgow to get here. Reading that back and it is totally understandable. I find it so hard to believe that somehow I have landed up being a mother to someone in their 30’s, even if it is their very early 30’s. I still remember looking into those huge brown eyes when she was born, she didn’t really cry in those first few days, just lay there staring into space. I know they can’t focus in those days, but she really looked as though she was trying not to miss a single thing as it all had to be learned. I also remember the long nights walking around and around the house trying to stop her crying with colic and tearing myself apart as I was feeling so useless as there was nothing I could do. Those eyes of her’s always held more expression than the rest of her entire body, she spoke with them long before she found her voice and once she did, even though the words took time she chattered none stop as though the world depended on what she had to say, mind you I don’t think any Mother forgets things like that. At least she grew up to be beautiful and clever and still knows how to use those eyes of hers to get what she wants, something my Mother says she learned from me.

I remember when I was first diagnosed that I didn’t really know how to tell her, I felt as though I was letting her down just as much as I was letting myself down. I wasn’t meant to be ill, I was meant to be the Mother that was always there and always ready to be as active and outgoing as she was. I also remember that one of the first things I asked the doctors was about it being hereditary, as at that time there was a lot of talk about it running in families, although no one in mine has MS other than me, but almost every one of us has some form of autoimmune condition. I wanted to be sure before I spoke to her as the last thing I wanted was to have to tell her that this would be her future too, that I think would have really broken me. There seems to be something very human about the way we start from the instant what do I do, to what about those we love, we seem to be hard-wired to think of ourselves first, but the pain when we think of those around us, is somehow always worse. I wouldn’t wish PRMS on anyone, the thought that my children would one day follow in those footsteps, well that is just unthinkable, luckily the talk died down and the final word was that there was no proof at all that our families had any reason to worry about their own futures. To date, I am delighted to say that she hasn’t shown the slightest sign of any autoimmune conditions and is in good health, every single inch of her over 6 foot self. I know that today as always will take a lot out of me, but there are in everyone lives those days that make things worth it, spending time with her and John is worth it. It’s so different from the other things that steal my energy, I would rather spend a day with them here in the house than to get out of this house for a week.

Rightly or wrongly, I know that just like everyone else on this planet, the instant they arrive, I will be at my best, I won’t show my pain, or allow myself to be seen to wilt. Whether my act will work or not is yet to be seen, but it is something that I feel I need to do, simply because I don’t want anyone to see me as I normally am. I also know without a doubt that she will see right through it, even if she didn’t read my blog, which I know she does, but some games have to be played, as that is what life all too often is. Yesterday afternoon I even sat and tried to put on some makeup in the hope that I could make myself look that bit better, I don’t think it did that much. Yes, it hid the dark wells that surround my eyes, but I could still see the things that truly show it and no make-up will ever cover those. There is something that I can’t quite put my finger on that has changed totally about the way I look and no it isn’t just age, I have seen it often in people with long-term illness and I have never been able to explain it. You would think that with all the sleep I have and if you believe all the things you hear about skin and so on, that mine would look wonderful and those dark circles wouldn’t be there, but they are. My decision though is no make-up, for the time it took to put on, the results just weren’t worth it.

I am just hoping that my diaphragm won’t cause me as much trouble as it has been causing me in the last few weeks, I know that I am hoping for the impossible, but we all have to have hope. I don’t think I have had more than an hour where it hasn’t stopped me dead, just reminding me it is there, I just wish it would return to the same condition most peoples are in, that muscle that most don’t even know exactly where it is. I realised last night when I was lying in bed that when it is at it’s best these days, that it feels just like those wide tight elastic belts that I used to love wearing in the 90’s. I had a collection of them, all around 8 to 10 inches wide and all pinched my waist into a shape I couldn’t achieve anyway else despite trying every exercise possible. I used to wear them with three or four low slung belts which just exaggerated the look, but the odd bit is I didn’t mind the discomfort then, now it drives me mad and it doesn’t have any of the visual bonus effects. I can only guess that the fact I was once used to it, is the reason that I didn’t and don’t complain too much about it when it is at this level, to me it is a memory, but there is nothing good about it when it gets tighter, the belts never tried to stop me breathing and on the odd occasion that they annoyed me, well I could at least take them off.

Like every other day, all I can do is wait and see what happens, but with so much to look forward to, well I honestly don’t care if it tries to cut me in half before they arrive, I just want a few hours without mad levels of pain so I don’t even have to try and cover it up and I can just enjoy the time we have together.

Read my blog from 2 years ago today – 2/04/13 – Choose happiness > http://bit.ly/XaHsws

For one glorious moment this morning I though I had a day of being able to rest my brain from the problems of conversation, no visitors and Adam back at work. The thought lasted for just a few minutes, when I was hit by the memory that a. I have a delivery from ASDA this morning. b. I haven’t heard from Jake since last week, so the phone was most likely going to ring. This wasn’t going to be a the day I was looking forward to and within minutes…..