All mothers worry

Teressa phoned me last night. My first thoughts were clearly that she had spoken to her father, but to do that, I was sure that she would have gone to see him. After all, what I want her to talk to him about, isn’t exactly the sort of conversation you have over the phone. To do so would open up the possibility, that between speaking and actually having the forms in front of him to sign the deeds over, that he might just change his mind. No that is a conversation that needs to be had face to face. She was calling for two reasons, one to annoy me, and the other to surprise me. Firstly, yesterday was my birthday, I think birthdays are the most stupid thing that humans ever created. The whole idea, that we celebrate a person once a year, just doesn’t sit right with me. We should celebrate those we love all the time. If we see something we think they would like as a gift, then give it to them, whatever the date is. Why do it, just once a year? It has taken me years to get this through to Adam and everyone else, and everyone, other than my daughter, does just as I ask, ignore, 100% my birthday. The first words out of her mouth were “Happy Birthday Mum.” On the good side, she has stopped wasting money on cards.

The second thing she said was that she is coming up to Glasgow next week to spend a couple of days with me. She couldn’t say exactly how many days, as, her boss hasn’t confirmed the number yet, it could be two or three. She is about to leave Sega, who she has worked for, for years, firstly in San Fransisco and then in London, for a dream job with Microsoft. She will still be based here in the UK, but will be jetting all over Europe in charge of teams in several different countries. This short break, will probably, be her only opportunity to visit for a while, as her main holiday this year is to be spent in Ohio, visiting her husband’s family. Somewhere they were supposed to be last December, but all fell through, thanks to a mistake in timings, John made with applying for his new residence visa. Right now, it looks as though if she didn’t come here next week, it might well be next Christmas, if not longer, before I could even see her again. So I have something to look forward to.

Since her father snuck her out of the country when she was just 12, to live in New Zealand, and I eventually tracked them down, we have had a long distance relationship. We did have one glorious period of 6 months together when she flew home, to spent six months with me when Adam and I got married, before making the desition for work reasons, as there was none in the UK, to return to New Zealand. When she did get back, she phoned me straight away, her dad had returned to the UK in her absence and had said nothing. In the past 16 years, she has been married twice and lived on three different continents and has had a wonderful life. Everyone says that we are like two peas out of the same pod. We look alike, share the same sense of humor and frequently our words could have come from either mouth. We love the same TV programs and totally share our love of technology, especially PC’s. Our one big difference is this love of travel. I haven’t left the UK since I was 12, and I haven’t even left Scotland, for more than two days, in the last 20 years. I have never even owned a passport. I suppose her father had to have something to do with her, although apart from that, it’s hard to see what.

I guess it’s only natural, that as a mother, no matter what the medical world says, that I fear that she too will become ill at some point. It doesn’t matter how often they say that MS isn’t hereditary, I have this constant niggle in the back of my head. I probably wouldn’t be a mother if I didn’t. My family are plagued with autoimmune conditions. From Asthma that requires oxygen on hand 24/7, rheumatoid arthritis, and dozens of other minor conditions, plus a condition I have never been able to remember the name of, that my brother has. Apparently, there are only three people in Scotland with it. It attacks the kidneys and causes his lower body to become totally solid, his legs literary turn into wood, and yes, it is painful. If he is lucky he is just bedbound by fatigue, at other times he has is hospital bound, when it was at it’s worst. Yet again there is nothing they can do. Right now, he is in remission, but there isn’t one of us, who doesn’t have something. My grandmother died from some mysterious illness in the 1960’s, from the little I know, it sounds as though her life wasn’t dissimilar to mine. So yes, I worry about my daughter. So far, the only thing I know she has, just like me, she has what they now call HMS, I always knew it as double jointed.

I know that I am not a doctor, but when I look at my family and hear stories from others, about their’s, I can’t help but wonder if there is something in our genes, that open up the possibility, of the entire spectrum of autoimmune conditions. If you like, that we have a rogue gene that forms the firing pin, when other factors in our lives match up, they form the bullet. It is those other factors, that determine which particular form, we each develop. So no, none of the conditions aren’t hereditary, just the weakness that makes them possible. Coincidence is something that might explain a couple of people in the same family, but entire families, I believe, is stretching it too far. I guess though, like all parents, all I can do is sit back and just hope.

 

Please read my blog from 2 years ago today – 09/02/2014 – It’s written

It is now a habit for me and one I recommend everyone ill or not also fits into their day, time to just listen to your body. I started it as when this whole mess of illness began things came and went, often they were difficult……

 

 

 

 

 

This week never ends

Success! Well, let’s say an improvement. Last night, I split up taking all my different inhalers by an hour and instead of my heart going into hyper mode, it stayed reasonably normal. My resting rate actually remained between 97 and 100, something that I am not going to worry myself about. Especially after hearing from a couple of very helpful people who convinced me that it wasn’t to be worried about. I am not convinced that I actually need to allow a whole hour between the meds either, but I do think keeping them apart by a buffer zone is a good idea. I think that lungs are actually sensitive organs and it’s really too much to expect them to deal with all of them at the same time when they aren’t used to them. I do intend to start bringing them slowly together until I find if I can or can’t cope. I really don’t want the entirety of my day to be spent thinking about the next drug to take and when to do it. There is also a danger of course that without Adam here, that I will simply forget, as I have done millions of times in the past.

I had just lain down on the bed yesterday afternoon when the phone rang. For some reason that I can’t explain, I hadn’t put my earplugs in before lying down. Normally it is the first thing I do on sitting on the side of the bed, but yesterday, I just lay down not even in my normal position, I had my feet flat on the mattress and my legs crossed, a position I was never going to go to sleep in. No one calls during the day, other than Adam and Jake. I had heard from Jake twice this week already and Adam had spoken to me just after 1 pm, so I was surprised it was ringing at all. To my greater surprise, it was my daughter, Teressa. She should have been at work so that alone meant I was ready for bad news of some sort, I was both right and wrong at the same time. She and a couple of colleagues had been going over to an outsourcing unit that does some work for Saga and they were going to check on progress with their work when they crashed on the motorway. Teressa doesn’t drive and was lucky to be in the back of the car wearing her seat belt. She had been totally unhurt other than taking a bang on the head. I was surprised that she wasn’t in the hospital, but she had been checked over by the paramedics and they told her to go home and not go to sleep for the next six hours. It was her driver who had been at fault, he had been going to fast and was impatient and had tried to undertake the car ahead. The other driver clearly didn’t see them illegally maneuvering behind them and they picked the same moment to change to the middle lane. They hit that car along with the central barrier and two other cars before landing up in a ditch. The car was a total right off and no one knows where the missing wheel is. All three of them walked away unscathed.

Once home and having convinced, almost, her husband that she was fine she wanted to speak to her Mum. It’s odd how we all want to talk to our parents when things go wrong. No matter how much my Mum destroyed my life, she is still my Mum and I used to phone her whenever I needed that comfort that no other person could. Teressa may be in her thirties now, but she’s still my midget and it’s so nice to know that she still feels the bond that I do. You would think that after us spending most of her lifetime on different continents, that having her here in the UK would make life so different, but she is still too far away to give a cuddle to when it’s needed. Oddly, knowing that she is just in London is one of the things that made my being housebound harder. When she was on the other side of the world, unless she came to the UK there was no way we could just drop in for lunch. So OK, I wouldn’t probably have ever travelled all the way to London just for lunch, but you get the idea. She is close now, not so far away that contact is impossible and I still can’t get to her, no matter how much she might need me. I had to even watch her getting married by webcam, despite the fact that they were less than 30 miles from here.

I have grown so used to being housebound. To all the things that can’t be done and all the things that I have to miss out on. I can say with total honesty that there isn’t a single person out there who I have no contact with any longer, that I miss. Even those people who I thought were going to be my friends for the rest of my life, yet vanished because I became ill. Even when you are housebound, you have to accept that the world moves on and to most of them I am sure that I am nothing more than fleeting memory every now and then, as they are to me. Not being able to just pack a bag, jump on a train and go to London to visit my daughter, to see her home, the area that she lives in and the places she spends her time and happiness, hurts. It is one of the problems of modern life, families are scattered all over the world. As we age or become ill, we can’t expect them to return and move just to be near us, they have their own lives and they have to live them. Even the modern amazing systems we can use to stay in contact, can’t make up for that actual time spent together. I don’t care what anyone says, not the telephone or even skype comes close to actually sitting with a real live human face to face. I am lucky, I have Adam, so I have the love, the company and care that we all need, but for those who don’t have a loving partner who has stood by them, it must be a million times harder.

There has over the years that I have been housebound, repeated concern shown for the fact that in a normal week I don’t see anyone other than Adam. The amount of able bodied people who can’t accept that I don’t need anyone else, that I am truly happy in the life that I have has amazed me. I fully admit that if it hadn’t been for my blog and all the people I have come across online, it might be very different. I truly believe that as long as you are busy and happy doing the things that keep you busy, that even when housebound, you only need that one special person. That doesn’t mean I don’t miss things or some people, I just admitted that I do, but you have to accept the limitations life has brought you and live within it. I do understand the concerns of other, of course, I do. If I had been asked 20 years ago could I be happy being housebound, the answer would have been a total no. None of us knows what we are capable of until we are there and even the things we were once scared of, can actually turn out to be the total opposite.

Please read my blog from two years ago – 12/09/2013 – Where is the detail and description

Yesterday and today so far have been filled with discomfort that just won’t go away, I have to say I am getting rather fed up with not being able to just sit without this solid hands with band right around my body. If you place you little finger on your lower rib, keeping your fingers…….

The visit

Good morning world! don’t know why just felt like saying that. I am sat here at 9:30 in the morning all sorted for the day, hair done and everything, why? Simple, Teressa is on her way to spend the day with me. I haven’t seen her for two years, something that should change now that she is in the UK to stay but with all her settling into a new job, new city, new flat and organising a wedding she really hasn’t had a chance to take a long weekend and make the journey north. Today as you might be able to guess is going to be a day of silly girly talk and mother, daughter banter. I have often thought that calling myself a Mum really isn’t right as I have actually spent so little of her life with her, with her father taking her to New Zealand when she was 12 my Mother roll ended, it took me two years to find her, but even then such a long distance relationship has been difficult. It is only when I sit listening to my voice coming out of her mouth, that the similarities and my contribution to a wonderfully daughter is clear to me.

One of the things I really need to discuss with her today is the reasons she wanted so badly to return to the UK, I have been worrying probably wrongly, that she is back as she is worried by the distance between us due to my health. If she answers that it is homesickness for all her family in the UK then I will be content. I have this horrid niggle about her reasons and I really hope that I am wrong, I would hate to think that she through away her life in America just for me, as I have said to her many times, I am a big girl and I can look after myself, probably not totally true these days but true enough. I don’t know why but I have always had a problem with people doing anything on my accord, that includes everything that Adam now does for me, my independent streak is more than a mile wide and always has been. I have accepted now that Adam does what he does because he loves me and is happy to take over now I am not able myself, but it isn’t always easy to watch him doing the housework, something he has done piles of in the last few days, not because I asked him to but I think because he knows that if I was able bodied I would have done the same before she came to visit. I seem to find it harder to think that Teressa would be doing the same as I have never asked anything of her because I wanted her to have her life not mine.

I am going to keep this short today as I still have a couple of things I want to try and do, well it’s my place to add the final small things that will make me and her I hope, happy to be here. I expect tomorrows post will be a long one with lots of things to tell you. For today I have upped my painkillers so that I have enough peace to enjoy my day with her and by playing with another one that will hopefully keep me awake through out the whole day as well. This day has been long looked forward to and I want to enjoy all of it.

Happily living abnormally

I was reading through some posts today and I kept coming across one of those pet hate phrases, one that has always annoyed me ‘a normal life’, I wish someone would tell me exactly what ‘a normal life’ is. When I look back on mine I think I have had several different lives and none that I would describe a normal or abnormal. I always seem to somehow be living lives that others find odd a little odd. Through out my life I have unconsciously tried to cram in as much that was different as I could. Yesterday I showed the dark-side of my teen years but like everyone else had a good side as well. I think many would have said I was a bit of a wild child and like all kids I thought I was right, I was safe and I knew better than any adult.

My daughter in her teen years lived with her father in New Zealand so I was saved the parenting role of teenage monster. I have always found it strange how like me Teressa is, she sees it as well and it is freaky. When her father and I split, I made the decision that I thought would be best for her, she was just six year old. Jim was an officer in the Royal Navy and the Navy supplied and paid for child care and schooling. The plan was that she would be cared for by a Nanny and when old enough she would go to boarding school and get a really good education. I wanted but couldn’t take her with me, I couldn’t offer her anything, I had a job as a barmaid living in at the hotel I worked in. I couldn’t afford a flat or child care and as for an education equal to what she had ahead of her, was way out of me reach.

We saw each other as much as possible but when her father married an ex-friend of mine things got difficult. When they took her to New Zealand without telling me it was impossible. It took me nearly two years to find her. Her father thought I must have used a PI but it was easier than that. I knew which country she was in, the new owners of their house in Scotland told me when I phoned to make arrangements for her to come and see me. I just had to play the waiting game. Her father was a computer geek and he eventually put a big sticker on the map in the shape of an online profile. I now knew which city and who his employers were. Next to the library and the Auckland telephone directory, bingo I had his address and phone number. Luck was on my side as the person who answered the phone was Teressa.

Despite all the time we spent apart there is no doubt that she is her mothers daughter. We talk alike, we like the same things and we laugh at the same things. She told me it used to drive her step mother mad, because I was there all the time. The other freaky thing is we have talked a lot about our lives in detail and the things we have done are so similar, they are scarey, it is almost as if we have lived the same life at times. Neither of which would be described as normal, but neither were ever planned that way.

I sometimes wonder if I knew that I was going to eventually not be able to get out and about as looking back I seem to have crammed in as much as I could at every turn. I tried, followed, involved and experienced every and anything that came my way, the stranger the places you go, the stranger the things you do and I truly recommend living the abnormal life.

Skype, wheelchairs and mothers day

I continued my experiment last night as I had to take another dose before Adam could get to the shops and I mixed it with just the tonic water, I was tempted to add the Gin as well but I prefer to sip that slowly. I have to say that tonic worked quite well, at least to the point that I could drink it rather than gag on it. I used the tonic again this morning and hopefully I will have a good squirt of lemon to add to it this evening.

I had a really nice evening last night I talked via Skype with my daughter for the first time. We didn’t speak about anything that important just chatter about life and her career, but catching up was fabulous. Skype is another one of those things I wish I had set up long ago and one that I can see in the future being used far more by everyone. I can see how it would be a fabulous way of cutting costs and time for doctors appointments. The Skype call last night was just great, getting to actually see her and talk at the same time was a wonderful treat, even though it looked as thought she had her PC in her wardrobe. It had me rather confused until she explained the lay out of her flat, the small corridor between the bedroom and the bathroom is used as a walk in wardrobe. There just happened to be one of the most precious things in old flats, a power socket. I had to agree with that one, when we bought this flat we installed a new kitchen, tripling the sockets in that room, but we still have extension cables for running some items. It seems to me that there are always two thing that builders get wrong in every house I have ever lived in, old or new, power sockets and cupboards, there are never enough of either.

When ever this house was re-wired there was one thing they did that I am really pleased about, there is not one power point set in the skirting board, all of them are about 18 inches off the floor. With my mobility and balance somewhat wobbly, it really makes a huge difference as bending over can be a dangerous procedure. So many people just look at the obvious problems that disability and think that providing a wheelchair and some grab bars is all that is really needed. OK that may help but it is really the millions of small things, that add up to far larger ones.

I have lost count the number of times that I have found myself stumped by something as simple as dropping the cap from a bottle of coke, an open bottle can’t go back in the fridge it will just go flat. I tried a long grabber stick but my tremors made it impossible and if it did work, one would be required for each room, wondering around is tiring. I found the answer to that one eventually, I now have in the butter shelf of the fridge a collection of bottle tops, if I drop one it stays there until Adam is home and I use one from the shelf. Now take that simple problem and think of the thousands of other items that this can be applied to, not one is answered by a wheelchair or a grab bar.