All mothers worry

Posted on February 9, 2016 by livinginalimitedword

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……

Who’s fault?

Posted on December 17, 2015 by livinginalimitedword

It appears as though Adam is coming down with a bug, so I guess, within the next couple of days, I probably will too. I know for a fact, that Adam worries constantly about bringing bugs home with him, especially as he works in a hospital. At times, I know it worries him more than others, I can tell when it’s playing on his mind. It’s not because he acts any different in front of me, but because he comes home, stinking of the gel that is available for your hands, at the entrance of every ward and department. I also know, that it worries him that he might even bring something home on his clothes, as he used to come into the house and come straight to me for a kiss. Now, he removes his coat and his over shirt, before washing his hands, and eventually, I then, get that kiss. He worries terribly that with my being so weak healthwise, that I will get so ill that I land up in the hospital, myself. I suppose that it must be a worry for anyone who is the carer of someone who is housebound. I don’t worry about it at all, as if I were going out, I would be surrounded by germs, getting ill, would be just one of those things that happen. Being housebound, hasn’t changed that view to me. We both have to live our lives, without everything being about my health.

To be honest, throughout the time I have been diagnosed with PRMS, I have actually picked up relatively few bugs, even colds. I used to get the flu jab every year, and I don’t care what anyone says, from the time I started getting it, I never had a single cold. I know they are totally different things, but there are an amazingly high number of people, who say exactly the same thing. Since I have been housebound, I no longer get the jab. I am sure that I am still entitled to it, but it would require the doctor to come to me, which is highly unlikely. Luckily, as Adam works for the NHS, he now gets the jab free, so in an around about way, I am still protected. By the way, Adam has also found that he no longer catches colds either. I think he might have had a couple of mild ones, but not like the ones he used to have, the ones that always turned into “Man Flu”. Without a doubt, Adam’s care over keeping bugs away from me, either works or my over active immune system, actually does work as some sort of protector. The only part of me it seems to fail over, are my lungs. Chest infections are no stranger and I know that my diagnosis of COPD coincided with a pickup in Adams cleanliness routines. It didn’t stop me from having pneumonia last July, granted it was a funny time of year for it, but it happened. It is a fact that both of us will have to learn to live with, I will get ill, regardless of the care he works so hard to give me.

I honestly believe that the fact I am housebound, actually increases the chances of me becoming far iller, far more quickly. I am simply over protected. If you aren’t out there amongst the normal everyday bugs, you don’t develop the immunity needed to fight their bigger more grown up cousins. To me, the world has gone mad with all the different range of antibacterial sprays, wipes, laundry additives and so on. You can’t watch TV these days, without seeing advert after advert, that try to tell you, that you’re a bad parent, if you don’t use them all, to protect your family. Which is total madness! If you want to protect yourself and your family, go outside, play in the dirt, get dirty, get covered in everything that world naturally produces, then don’t zap the goodness of nature, just wash normally. Your immune system will thank you for it, your children won’t grow up without allergies and asthma, things that didn’t really exist, until we stopped children playing outside and even eating dirt, which they inevitably do. Which actually, isn’t as daft as it sounds, as dirt, is exactly where they are finding our new much needed antibiotics. Living in a bacteria and germ-free environment, is the perfect recipe for getting ill. Adam, is as close to a germ-free environment, as a human can be, by the time he reaches me, and other than the odd delivery man, he is the only person, I get within two feet off.

I don’t know when I will next be ill, none of us do. I do understand his fears, all too well, as I don’t want to land up ill and in the hospital any more than he wants me too. Illness for me isn’t something I think I catch anyway. When I get ill these days, it is my body that does it. Granted, catching a bad cold, could, possibly, turn into pneumonia, but it is far more likely, that I will just develop it myself. Back in July, there wasn’t any precursor, no lead up in any way what so ever, I quite simply woke up ill, really ill. The day before, I felt as I had done for ages, but what I hadn’t picked up on as wrong, was that my lungs were more congested than normal. For about a couple of weeks beforehand, I had had a slight cough, something I don’t normally have at all. I don’t have and never have had, a smokers cough. Some might see that as odd, but it’s a total fact, my lungs coped with everything that was thrown at them. My COPD is down to two things, emphysema which is still only at level one and not bothering me greatly, but mainly it’s driven by my PRMS. The mechanism that makes me breath isn’t working properly, well, a long way from properly at times. I am almost certain, that what caused my pneumonia, was just that. I wasn’t taking proper breaths, the liquids we all have in our lungs wasn’t being removed and it slowly built up, was trapped by my lungs not inflating properly and collapsing under pressure, then putrified, and I became ill. It’s a danger I can do nothing about, other than to keep using the inhalers and my nebuliser, both there to help keep the whole system open and working.

The fact Adam isn’t feeling too well isn’t the only driver behind my writing about this today. For the last few days, I have had a very slight cough and my right lung, feels not exactly what you would call right. Let me say this here, before Adam, starts to worry, this happens frequently. When I am lying down, I get sharp pains in precise points and a dull feeling throughout that one side. Breathing is mildly painful, every breath can be felt from my throat, right through to arriving in my lung. The past few cold days, haven’t helped at all. Our bedroom is always colder than the rest of the house, and I know that doesn’t help. Cold air, always feels as though it scours its way into my body, so I ignore that, it’s not a symptom, just a warning. I started yesterday feeling it in a perfectly warm room, which made me sit up and pay a little closer attention. Over the last few days, I have noted that heavy dull feeling to my lungs, even my nebuliser doesn’t lift it straight away. In fact, the first 10 to 20 breaths with it are hard, really hard, but eases a little as I go on, sometimes, it doesn’t seem to help at all. As I said, this isn’t new, I’ve only had my nebuliser for about 4 months I think, and I have been through this twice before in that time. Before it came to nothing, which I expect this will as well, but I wanted it here in black and white, so if I’m wrong, if I do get ill, Adam can see clearly, that it isn’t his fault.

Please read my blog from 2 years ago today – 17/12/2013 – Christmas past, present and future

Adam and I were talking the other evening about the best Christmas presents we received when we were children, to my surprise I could actually only remember a 2 my “Tiny Tears” doll and my adult size bicycle. It didn’t……

Flare Danger

Posted on October 8, 2012 by livinginalimitedword

I didn’t tell Adam before he went to work this morning but I am really struggling today. There is always the danger that when something else is wrong, that MS goes into a flare, I am not sure if that is what is happening yet as it takes time to know. Flares always heighten some existing symptom on top of just being ill. The problem with having another illness or just a bug, is of course the immune system being activated. MS is your own immune system attacking you, having it activated to fight something else, means it’s normal attack rate is heightened, so staying well is more important for anyone with an autoimmune illness. What I know at the minute is I am ill and I want to go to bed and lie there, I think I have a slight temperature, but it is the feeling of wanting to be sick and just a general not well condition. I also know I need to sleep more another sign of something wrong, the past two days I have slept the full 2hrs in the afternoon being woken by the alarm and in bed exhausted by 10 having struggled to stay awake that long, sleeping again until the alarm tells me to get up.

Normally in the morning I would just have a slice of bread with my coffee and meds but today I treated myself to blackened toast and marmalade, not everyone’s choice I know, but I just love my toast burnt, so it wasn’t one of my many cooking accidents. I always find myself having treats when I feel bad, they never make me feel better but there is always the hope. I have always believed that your body tells you when there is something wrong what to eat to make it better, the burnt toast will of course add charcoal into my stomach and it is known to help settle a bad stomach, so it would explain why I wanted to eat that today, although I am not sure what the effects of the marmalade are other than a great taste combination. Unfortunately neither the charcoal or the medicine I have to stop me feeling sick are working or it could be the old problem they are working and without them I would be feeling even worse. On the good side I have just had a phone call from the MS nurse wanting to come out and see me for my annual check up and she is going to be here on Thursday, so by then I hope to have a better idea of what is going on. I can’t help thinking that this is my gallstones as I have felt like this a lot in the last few months but not as badly, when you have a many things wrong with you as I do, the big problem always is separating out what is causing what and is it something new or different.

Having been locked inside my home for so long I haven’t had even a cold for years, and luckily Adam hasn’t brought home any bugs from work, he is in general normally a person who doesn’t get things that are going around. I was worried when I went out to the hospital twice in the last few weeks that I might come down with at least a cold, I never had to spend any length of time near people, so luck was on my side. I often think that being housebound has actually kept me in better health than if I was still spending many hours in the outer world surrounded by flues, bugs and colds. I used to have bronchitis every winter and it was bad enough to be listed as chronic, I haven’t had a single attack since being housebound, on it’s own that is a huge plus as I frequently would be bad enough to land me up at the hospital for treatments to allow me to breath. It is a little strange to think that a side effect of one chronic illness has been to totally cure another, I suppose no matter how small, a plus is a plus and I am grateful for that.

Bucking the trend

Posted on April 14, 2012 by livinginalimitedword

Sometimes we sit and dream about nothing. Yes we do. Think about it. How many times a day do sit looking for the next word that is needed in that email you are righting, then finding that you aren’t actually even thinking about that, your just starring into space or you screen, as blank as the space you are meant to be filling? Now ask yourself again. I bet you have just found an answer you didn’t expect, don’t worry we all do it.

I asked you to think about this for a reason, can you imagine doing that 100, 500 times a day. Not being able to find words in mid sentence, not just when you are writing but speaking. Then add in a new problem, you start to stutter every 9th or 10th word and while you are trying to get that word out, you forget what the word your stuttering over is. Starting to build a picture, getting a little frustrated? Yep that’s the next issue to add, frustration because that is the cherry on top, you slowly want to explode. Oh I nearly forgot, also add in that when you are typing, you start to forget how to spell things as well. Welcome to my world. That is what I go through all the time, sorry that is an exaggeration, not all the time just most of it.

I expect that you are now wondering how and why I put myself through writing every day. Although recently have seen research that says the opposite, I really do believe that if you don’t use it you loose it. I have seen too many people who sit down and give up, to me not surprisingly they slowly turn into the vegetable they expected to be. I daily push myself to write, remember, speak and anything else that I have problems with so I can hold on to the basic ability.

When I first got the diagnosis of Fibromyalgia, I did sit down and cry for a few days but mainly because I didn’t understand what it was and I thought that all autoimmune conditions were like Motor Neurone disease, I was dieing and there was nothing that could be done. Once I had slapped myself around the face and used the logic I was born with, I found out what Fibromyaligia was and what impact it would have on my life. Like most things once you know what something is, it isn’t as bad as you imagined, happy that I wasn’t going to die tomorrow, I started pulling myself together and MS diagnosis arrived. It seemed I had learned nothing as I went through the same thing again. When I started to really loose functions, I decided to fight back.

Nothing is going to get the better of me without my first trying to get the better of it. Research or not I really believe that making yourself hold on to all your abilities is the only way to maintain them. Part of my last job was that of an analyst and I know better than many that you can make figures say what ever you want, so one research document saying that it makes no difference long term, to me means nothing. I have seen with my own eyes and heard of people who are still working into their nineties and beyond, who are totally fit and active and I believe they are as with it as they are, because they didn’t retire and they didn’t give up. Well watch this space as this is one lady who is out to buck the figures and still be in control for a long time to come regardless of what MS or Fibro is doing to me, I fight it.

Ticking the boxes

Posted on February 18, 2012 by livinginalimitedword

I was sat today for some reason going through all of the stuff that I remembered from just after I was told that I had progressive MS, there were several conditions apart from MS, one of them was diagnosed just the year before and confirmed again by the neurologist. At the time I remember thinking that the world had ended as I trolled the web trying to find out what Fibromyalgia was. At the base level it is an autoimmune disorder that causes pain, really bad pain and fatigue, I thought when the MS diagnosis came back that there had been a mistake with the diagnosis of Fibro but I was told there was no such luck.

The definition of Fibro is that “Most patients with Fibromyalgia say that they ache all over. Their muscles may feel like they have been pulled or overworked. Sometimes the muscles twitch and at other times they burn.” They do sound similar, but Fibro doesn’t generally cause the tremors, memory, speech, lesions and eating problems. I do have both, no luck. I have had IBS, Asthma and Arthritis for years and the fact that these are autoimmune illnesses as well, I am left believing that there may be a hereditary element. My family has a history of other autoimmune illnesses, only my oldest brother is free of them, I am the one who seems to have the largest number of them. I keep hearing that that has been ruled out in MS, but I really can’t help think there has to be. Although I already believe that I have the oddest family on earth, there has to be a limit to coincidence.

I know that the combination that has appeared in me, has caused treatment problems, how do I tell the difference between MS pain and Fibro pain, I can’t. Treatments for pain varies, if I have pain in my leg it could be the muscle or just the nerve causing it. What pill do I take? Which will be the best at controlling it? Or with my luck is it something else altogether? The result is I land up taking what I am given and hope it covers the spectrum, but the result isn’t always right.

I haven’t seen my doctor now for 4 years. I bet that surprises most of you, but it is the truth. We talk on the phone and agree between us the next step. It can be difficult to explain at times where the pain points are but having just joined Skype, I see now that probably about 50% of all doctors appointments could be covered that way. I truly think it could save a fortune for the NHS, I actually can only think of a few consultations that have actually been more than a conversation in past. Yes if I had a bad cough or something but other than that we talked, I got a prescription and that was that. Skype consultations could save the whole nation a fortune. To get to my doctor is cost £14 in transport for me, other too must have that problem and if at work you could take 5 mins to talk to a doctor rather than time off work the economy would gain in less business hours lost. This would also allow doctors more time for appointments that needed diagnostic skills as Skype consultations would take less booked time.

Ooops the brain train is running again. You or even I have no idea where it is heading so it’s best to stop here for today 😉

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