I thought the other day that I was imagining it, especially as I spoke about it just a few weeks ago, but yesterday proved to me that it is real, I am now getting muscles locking in my throat. For years, I have have been getting things stuck in my throat as I explained a couple of weeks ago, but when I suddenly found myself starting to have a painful throat, I just put it down to being more aware having just written a detailed piece about it and then did my best to forget about it. Something that I was finding really rather easy to do throughout the day, but by the evening I was finding that I was very aware of it and ignoring it was impossible. It is like any other spasm, in that suddenly all the muscles go tight and lock up, luckily just for a few seconds so far, but they leave behind the feeling similar to having a sore throat. I had noticed it a few times in the last few months when I was lying in bed, nothing to do with lying down, more a case of it was so mild that if I hadn’t been isolated in my ear plugged, eyemask cocoon, I would never have paid any attention to it at all. Last week I had a couple of days of it, not badly, but they were there and I did on a couple of evenings really wonder if that was it, I had a straight forward sore throat, but it didn’t feel quite right as it was yet another thing that felt muscular, not just like the internal lining to my throat. I can’t think of a single day recently where I haven’t managed to get something caught in my throat, but yesterday I was eating noodles and one of them managed to get caught. I could feel that my throat was tight and this stupid noodle was still sort of in my mouth whilst also in my throat, but I couldn’t get it clear of my throat at all, then suddenly it released and normal service was restored. It was once I finished my lunch that I started to think about it and I realised then that I have actually not had a single day recently where I haven’t had at least one spell each day with my throat causing me discomfort. I can’t actually say that it is painful, as it’s not, it’s just annoying. I have a vague memory of saying a while back that I thought I had started to have spasms in the front of my neck, well I am now saying that to go with the ones I get in the sides and back, they are in the front as well and inside. That is the one good thing about our necks, they are made up from a network of small muscles rather than large slabs of them, one going into a spasm by itself isn’t usually dangerous at all, just really annoying.
I am sure that if I hadn’t been having issues for years and this had been the first time that food and I were in disagreement, I might have panicked, which without a doubt would have made things worse. I know that the first symptoms with MS can be anything from headaches to total loss of limbs, but I am so glad that for me it has been this slow rise of different things all over the place. I can’t imagine how it would feel to wake up one day and suddenly have one of the major symptoms without the slightest idea of what is behind it. Even when you know what is happening it is bad enough, but the feeling that your throat is closed and won’t open would put most people into a spin, luckily the noodle wasn’t even stuck long enough for me to start being scared, plus I knew what was behind it and I also knew that panic makes everything worse. I guess that I am just going to have to start being more careful how I eat and remember to try and swallow in one chewed up lump, rather than small bits. I was told years ago that in my case it was better to swallow amounts that were big enough to bypass rather than get caught in the pouch in my throat, it is something I do try to do, but like everything else, I forget from time to time. This morning was the first day that I have actually woken up with an ache that runs from the front of my jaw in a two-inch wide band right down the front of my neck and includes the base of my tongue. I have either being having spasms while I slept or more likely my efforts to clear that one noodle, actually means I have slightly pulled all the muscles in that area. Either way, one more area of my body has now succumbed to the onslaught of PRMS.
I didn’t mention this yesterday as well yesterday subject felt far more important to tackle than another post about shopping, even if it is one that is going to affect a huge number of people, able-bodied or disabled. When I had that run in with the rudest delivery driver from hell a month ago, I had checked their terms and conditions and found that I was totally right and what he had said about not being allowed to come upstairs or enter my home was total rubbish. So I was shocked on Monday when I had yet a second, but a very nice driver, stood at my door saying exactly the same thing. He was perfectly politely and he said that the terms and conditions had changed two weeks ago and although he eventually did assist me it was so stupid they way he did it that I was left laughing. He made sure that he didn’t entirely enter the house by keeping one foot outside and stepping forward on the other so he could empty the shopping onto the floor for me. When he left and I had put the frozen items away, I headed back to my PC and checked not just Asda’s but other shops as well, what I found shocked me. Both Asda’s and Sainsbury’s no longer deliver to the flat where the order is expected but just to the “communal entrance”. On reading Asda’s, it is a little ambiguous as to whether or not they can enter the building or not, it too appears to be connected to your kitchens location vertically within the building, so far Tesco has no restrictions. I had more or less decided that I had no option other than to change to Tesco, but I thought it was worth once again phoning the store and I was once again assured that the driver should have delivered my shopping as requested to the floor in my hallway and that if the customer requested help it should have been given. For now I am going to remain with them, but I have said and I mean it, one more driver refusing to simply empty the contents onto the floor and I am off. I do think though that it is wrong that a company can change its terms and conditions like this without telling the customers. If the driver had refused to bring it upstair, which according to the terms, he has the right to do even if it is just on his own whim, I would have had to refuse the entire shop. I can’t help wondering how many angry customers there will be around the country having to fetch their shopping from however numbers of floors below, it could even mean mothers having to leave their children in their flat alone, whilst they bring the shopping up from below. Once again, companies putting in new rules that suit them as it saves time but removing the entire element of service, they, of course, will put it down to insurance costs, but if I let the driver through the entrance system, he is then invited in by me and covered by my public liability insurance, something every home owner has to have, so insurance isn’t a valid reason. As for those of us who really need help, well it appears that we will have to be prepared to declare our illness to every company, just to get that little bit more help from what used to be an anonymous service for all.
A month ago the driver who was so rude and aggressive clearly had a problem with the fact that I was telling him I was disabled as he couldn’t see it, but out of pure interest I decided to test the second driver as to his attitude. I know without a doubt that he didn’t have the slightest idea why I was asking but I simply asked, “If it were an 80-year-old you were delivering to, would you give them the help they asked for”, his answer was telling as he said “I would”. Clearly I was yet again dealing with perception, he couldn’t see anything other than I didn’t walk perfectly, so he couldn’t see why I couldn’t manage to do myself, what I was asking him to do. I really do curse the invisibility of my health, it makes life so much harder for so many of us, I have to admit to wondering about putting my wheelchair in the hallway when I am expecting a delivery in the hope that seeing it might make them think twice, but that to me is a low trick and not something I personally want to do. I know it is human nature to judge others on what we see in the first few seconds of meeting that person, but in the entire 30 years of being ill, I have only ever had one person look at me and actually ask me if I have MS and that was a doctor I met 2 years ago. He was in his 50’s and had spent the majority of his working life in Aberdeen working with people with MS, so he had a good chance of getting it right, but the average person in the street, well they don’t stand the slightest chance of seeing anything. I don’t know what the answer is, short of us all wearing some kind of badge that says we are ill, which I for one wouldn’t want to, I honestly don’t know how this will ever change.
Read my blog from 2 years ago today – 13/05/13 – A why, a what, but not the answer
Yesterday I asked anyone if they could help with a possible theory I had about nerve pain I was having in my head, the pain is always very precise, extremely painful and short-lived, appearing in pulses for a short period of time then vanishing. In the past, I had done the dreaded on in search for possible reasons and I had come across……
Hello there – when I first started having problems with my hands and arms around 30years ago, a very wise consulting dr advised me to make sure I wore my splints when I was out so that my problem wasn’t invisible. It certainly makes a difference to people’s perceptions. These days I use a walking stick – sometimes I need it, sometimes I don’t, especially once I get to work. But I’ ex decided that I will take it with me and use it even if only as an accessory on my good days. Again, it makes a huge difference to how people treat me – despite my relative ‘youth’ (*cough).
So where I’m going is, it’s not a low act to leave your wheelchair around for them to see – I don’t like ‘using’ my disability, and I can understand how you feel, but if it makes the difference between an indifferent delivery bloke, and one who’ll go out of his way to help – I’d have that wheelchair out front and centre.
Love your writing 🙂
I AGREE, WITH BOTH. I DO NOT ANSWER THE DOOR WITHOUT MY CANE. THEY SEE DISABLED… I HOWEVER AM ARMED TO KNOCK HIS HEAD OFF.