Here we go again

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I know that I have been saying for quite a long time now that I am going to come back to writing, but it somehow just didn’t seem to happen. Days passed one by one and when you live in a world where every day is the same, they pass all too easily without even knowing that they have. I seem to have slowed down in everything that I do, it’s not intentional, but it doesn’t matter what it is, I’m slower at doing everything. The routine that I live too, just a few months ago always left me the afternoon to play with, which was often just what I did, I played games on my PC, now if I find an hour at the end of my day to play, I’m lucky. It is that more than anything else that has held me back from starting to write again, where was I going to find the time? I still don’t have the answer to that, but I have woken up to the fact that if I don’t write again, I probably never would and I couldn’t have that happen. I know already that each post is going to take me days to write, not just a couple hours, so please don’t expect to find them pouring out and appearing on every day, that is not going to happen, but I am back and I will write when I can.

Originally what caused me to stop was I honestly needed a break, but I had every intention of starting again after the New Year, I never thought it would be the New Year after that one. My plan was destroyed as I have been really not well for the first five months of this year. It actually all started on December 31st when I went into a flare. Unfortunately, it was a rather dramatic start to the year and even just as dramatic to witness. It was the worst flare I’ve had for a long time and it was one that I couldn’t hide from Adam. It left him very panicked and scared of what was happening to me. I was shaking and having extreme spasms that were making my breathing difficult at times. I’m normally really good at hiding all those things, other than when my body shakes, that’s impossible to hide. Adam has never been good at handling anything extreme, he is one of life’s worriers and incredibly good at assuming the worst. I’m not sure who took longer to feel normal again, him or me, but we both eventually got there, just for me to lose my voice. And so it went on, bouncing from one thing to another, struggling to find my health and somewhere along the line, my brain started to slow and I was struggling trying to just keep up with my daily routine. Trying to fill in all that has happened is almost impossible as I honestly can’t remember many of them, but they will become part of other posts as things happen to jog my memory.

One thing that has happened, is I have returned to seeing my MS consultant. Just after I became housebound, I stopped going to the hospital. I knew they would collect me by ambulance, but the effort it took and what it took out of me, just to have him listen, nod his head and say he would see me in a year, made it all seem pointless. Because of the unusual problems, I was having with sleeping, I feared that I had a large new lesion growing in my brain close to my sleep center, my district nurse said it was possible and that even if not, that I had to have it looked into. I know I have written about it in the past, but I had started finding myself sat on the edge of my bed in the middle of the night, unable to wake up fully and fighting with myself to stop myself falling to one side or the other. When I did wake properly, I always took myself to the loo and went into the kitchen to have a cigarette, but I was falling asleep in one or other places as well. Adam was having to come and find me and take me back to bed, with the whole thing to happen again a couple of hours later. They sent me for an MRI which showed that my hunch was wrong, I had thought there was a new lesion around my sleep center, but now that he had me back in front of him, my consultant started to actually help me with other things that he had before ignored. He changed some of my meds and has started me on a new one to help with the spasm which grow in number throughout the day until in the evening they are so tight and painful I don’t know what to do about them.

The first drug we tried I didn’t last long on, even though I only took half a tablet slowly built up to three times a day then increasing to whole tablets, by the time I reached two whole tablets and one half, I started falling, often. I’d found I had to be really careful and I had to think and concentrate every time I stood up. It was so bad one night, that I landed up falling backward into one of our units that is filled with part of my crystal collect. Only one glass was broken but I was hit on the head by a decanter. I refused to take any more. Luckily he had suggested another to try if I had problems and this second table is working well. I have to take it four times a day but I am happy now on two whole and two half tablets without issue and I’m holding there as their effect is good and I don’t feel I need anymore. So far my return to the consultant’s care is working well. We will see how things go, but the first smiling nod will see me pulling out again as there’s no point going if I don’t need to.

Through more tests, it was discovered that my night time adventures were being caused by a form of sleep apnea, one they can’t do anything to help with. Apparently my the fault lies with the signals being sent to my lungs from my brain, it seems to forget every now and then that I need to breath. Adam had said several times that he thought I was dead, in fact, he twice woke me up as he couldn’t wait any longer for me to actually take the next breath. The good news is, my brain does work it out, that’s why it keeps making me sit on the edge of the bed. Somewhere in my head, I know I have to breathe and I’m doing all that I can, to make it happen. So here I am with yet another condition to add to my ever-growing list.

The other biggy is more recent and at this moment still active. On the surface, it doesn’t sound like much when I say that I have a UTI, it’s just this infection has been live now for, well neither of us can really remember if it’s 10 weeks or 12. I have been on different antibiotics the whole time. Every time I finish a course of them, some of which have been for a week other totaling three weeks, with a gap of a couple of days between the first and second attempt. Every time I have finished a course of them, within 36hours the stinging starts all over again along with terrible pains in my lower stomach and I send in another sample for testing. Each test results, show a different bacteria than the first did and we start all over again with another attempt. It is driving me mad, but what can the doctors do, nothing really. Even if he sent me to see a specialist, they would do exactly the same thing, run urine tests and put me on antibiotics, so there is no point making the trip.

I promise I will be here within a month, probably a lot, lot sooner, For those of you who follow me on twitter, well all you have to do is look out for the blue lady from my home page, to appear in my tweets about #chronicillness, that will signal that I have made a new post that day, so keep your eyes open.

26 thoughts on “Here we go again”

  1. Great to read from you again. A long time coming. While these are all terrible things, the things that doninsted your existence a year ago don’t appear to be relevant anymore? I did sleep clinic before Christmas. Thi k I’ve got sleep apnea also. Not looking forward to the prospect of sleeping with a mask on. But it might beat not waking up at all? Finally a decent nights sleep! Some of your UTI stuff is probably worse if your immune is down. And constant antibiotics while necesRy doesn’t help. Good to hear from you all the same. Onward! Cheers,H

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    • I am also very pleased to hear from her again also !!! And it seems everyone has sleep apnea. My husband has the kind she has. Doesn’t breath for so long I think he’s dead. He sits straight up on the side of the bed also the starts breathing again. He will not use his machine. I also have it. But min is not as severe and I use mine sometime. But I can’t use the mask it keeps me awake. I use a new kind that fits around your ears and in your nose. Just like the thing for oxigen. It’s much easier to sleep with. Well, Im so excited I have to go tell my husband we heard from her.!!!! Hope you are as good as can be helentastic67!!

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      • Hopefully, I’m here for a long time to come, but I never thought I would stop for this long in the first place. I haven’t got a machine, they said that my sort doesn’t respond to it as it’s a signal from my brain that’s the problem. I have to say, I wasn’t sorry to hear that as I think I would have been like your husband, not using it 🙂

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      • Thanks that I can known your story. You are very brave woman.I admire you and your wisdom.
        I hope that you belive in God, witch is like bridge over the river of doubt.love Stasia

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  5. I’m so sorry you are experiencing increasing problems, but it is so good to hear from you again. Just because you are doing all the work and I’m merely a passive observer of your struggles, I think of you frequently and wonder how you’re doing.

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  6. So happy you are back. Even if it isn’t everyday or even every week. I understand to a point that it is taxing even if it is a relief to do this all the time. I sure can’t. My mhealthy mind( the only thing healthy about me) will not let me keep at something like writing everyday. I am too scattered and dyslexic. So much for the healthy mind. Haha. I seriously am so very glad to hear from you , and yes I check your tweets, and appreciate them but, Twitter makes me anxious. I know very strange of me. But Facebook does also. I can get on for a short amount of time and then I get anxious. Don’t know why….. But happily I can read your blgs all night ! Glad you have found something that is helping. It’s about time. And yes sleep apnea is a big problem. Are you using a c-pap or a no-go pap? Joey needs a bi-pap. I use ,sometimes , a c-pap. I can’t stand the mask so I use a new thing that fits around my ears and goes in my nose like oxegen. Anyway I read you post to Joey because it seems we both know you by now !!! He says he’s glad you are writing your blog again. Good job and I will be waiting for the next one and reading you on Twitter ❤️

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    • It appears everyone has sleep apnea these days, but I don’t have a machine at all, they thought about one but following discussion with other doctors mine came back and said they concensus was it wouldn’t help as it is purly a signal from my brain, the is something that can’t be over ridden other than by me.

      I understand the anxiety over facebook, I had to ditch it after a few months, but I still love twitter 🙂

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  8. American actress Selma Blair recently announced her own Multiple Sclerosis diagnosis, and I think she can sympathize with what you’ve been going through in ways few others could. Sometimes having a prominent sufferer helps bring these “invisible” illnesses to public light, and starts a discussion that is badly needed and otherwise wouldn’t take place.

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    • I’m sorry if you thought I was dead, my daughter did lecture me several times about just putting in a few lines to say I was still alive, but I felt it would get peoples hopes up that I might blog as I used to and keep going to my blog to check daily only to be disapointed. I guess there is no truly right answer. But I’m here and very much alive 🙂

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  10. I am filled with wonder and admiration for your amazing courage and drive that we should be lucky enough to have this blog from you with the most awful symptoms that you are experiencing. You are such an incredible source of strength to so many people suffering chronic illnesses such as M.S…M.N. Etc. You are and have been in my mind frequently over last few months and as you may have noticed I have made the odd comment or liked on your your Twitter posts, I only go on Twitter now and again But I always look for one of your posts.
    To me and I am sure others feel the same I feel like I have found a long lost friend again, so thank you for this huge effort on your part. 🌷❤️👍

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  11. Great to see you back again, but I’m sorry to hear you’ve had so much pain and so many issues. Unlike some, I knew from Twitter that you hadn’t left us completely, but it’s good to catch up with something more detailed than you could say in just 280 characters! Looking forward to hearing more of your story when you feel up to it.

    And to prove that not everyone suffers in the same way: I don’t have sleep apnoea! But I was tested for it when I was in the initial stages of my long period off work with depression, as I kept on jump starting myself awake. Apparently I have a breathing issue but not too serious. They advised me that sleeping in a more upright position would help, and it does seem to have done the job. I still wake up during the night but not feeling like I’ve just been shot. Maybe worth a try, if you can find a way to be comfortable with it? Take care 😊

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    • Clive, Just read your post and can’t believe you were not diagnosed with sleep apnea! Yay for you. You are the first person I ever met who was tested and did not have it!! Congratulations! I often feel like it’s all a big money making scheme, maybe not.????

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      • I think you have miss read what I said, I do have sleep apnea, but they can’t do anything about it. None of the various machines will do anything for me as I am not over weight nor do I have an issue with my throat that could be causeing it. Mine has to do with my MS as it is not sending the signal to my lungs to breath. Despite it being down to my MS, they are still calling it sleep apnea, I guess it is so that any doctor treating me in the future knows I have an issue 🙂

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  12. It’s great to have you back, I really missed reading your posts,, I was diagnosed with sleep apnea last Christmas when I was in hospital with double pneumonia. I was given the air machine for during the night,it does work very well, it’s a pain in the arse to put it on tho..

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