One day changes everything

It seemed as though yesterday’s day outing was never going to come to an end. We were eventually picked up by the ambulance just after 11 am, two hours after I should have been with the doctor. As soon as I arrived I was sent through to have an X-ray then back through to the clinic for a few test on my breathing. I really wasn’t expecting to have any problems with them as I was just expecting them to be the same as they were 2 years ago. Once weighed and measured, something I am quite sure hasn’t changed in the past two years, but they still had to check. Then it was the standard check on my pulse and oxygen levels, their result totally matched mine from earlier in the day, pulse 97, oxygen 91. I have to say I was really pleased they actually used a machine that I could see the result on, as it meant that I had the proof that my monitor works. I remembered there had been two or three different tests last time, I never got past the first one yesterday. All I had to do was sit with a tube in my mouth and a peg on my nose and breath. Firstly normally, secondly I had to take as much air in as I could and push it out of my lungs as fast and as hard as I could. The first one was no problem, I can breath what I call normally, she didn’t comment on that one. Blowing out seemed to cause huge problems for her. I had to repeat it 10 or 12 times, if not more. I kind of lost count as one of my intercostal muscles on my right side decided that it didn’t like any of it and went into a spasm. All I know is that they weren’t getting a consistent reading and the nurse didn’t like that and kept pushing me again and again. The more tired I became the unhappier she seemed. I tried to tell her that my muscles just weren’t up to it. I even explained that my intestine doesn’t work properly any longer, therefore it was feasible and likely that parts of my lungs weren’t working either. It wasn’t just my muscles that were tired, as I had been up since 6:30 am so I would be ready for the expected transport just after 8 am. By this point, I was almost ready for going back to my bed.

Eventually, she spoke to the consultant who immediately said to give me a nebulizer and let me rest for 15 minutes and to repeat three more times only. He told her that the readings were perfectly consistent with my condition, although she clearly had seen nothing like it. It’s nice to know that my lungs aren’t working consistently from one breath to the next. With the second round of tests over and done with, Adam and I eventually got to speak to the Dr ourselves. I went over all that has happened in the last few months, especially the exacerbation and the following decline. He has told us quite clearly that should anything like that happen again, we were just to call an ambulance and by-pass the Dr. Not that he was saying my Dr. was wrong, it is just GP’s are inclined to hold onto their patients and treat them at home, if we felt that I needed to be in hospital, then we probably really did need to be there and to just phone 999. Just arriving at A&E we would be seen quicker and helped quicker than we would if we were to be referred by a GP. It is just the way the system works. Because of the test and what we told him, I didn’t actually need to mention the fact I had bought a monitor, so it is my little mind reliever and something we have as a guiding tool for the future.

As for that future and the new treatments I have, well they weren’t what I was expecting, but if they help, I am happy to use them. Firstly, I am now the proud owner of a nebulizer. I am to use it at least twice every day, regardless of symptoms. If things are bad, I can use it up to 8 times in a day. Apparently, the tests did show a marked improvement after I had used it. I am to continue with Carbocisteine tablets, the Ventolin inhaler, and the Aclidinium 322mg inhaler. On top of all that, I have also been given a third inhaler, Seretide 250mg twice a day. All of this has one goal, to keep my airways open. The consultant said that when my ribcage and diaphragm go into spasm they are collapsing the airways, hence the burning and crushing feeling that I have and I suppose the feeling that I thought was a possible heart attack. He also said that my muscles aren’t strong enough to displace all the fluids and my sedentary lifestyle is letting them backing up at times. To me, reading back all those meds and knowing what they all do, it seems like a lot to throw at one small pair of lungs. If it makes it easier to breath, well I will just have to get used to it all. I am to return to see him in two months times, but he said to Adam that if we were worried about anything, he was to just stop by and talk to him. They know each other of course, because they work in the same hospital and see each other frequently. I was really surprised and impressed by him as it is over 2 years since I last saw him and he noticed that my speech had deteriorated since he last saw me, which prompted him to ask about how my MS was in general. I guess that he was putting two and two together. The changes in my MS from my intestine to my legs not wanting to hold me just shows the progression, my lungs are all mixed up in it.

We did not actually talk about oxygen, as I half expected as it was something we talked about before. It is one of the final treatments which we talked about on my first visit and I honestly didn’t think about the array of drugs that there are to use before we reach that point. I know many including me think that it is something you simply don’t get if you are a smoker, but as he said the first time, it isn’t as black and white as that. If the meds open up my lungs as hoped, well we have the answer for now. It will be a couple of days until I even have them, as hospitals never give prescriptions, just instructions to your GP. We posted the letter to him yesterday, so it will be probably Thursday or Friday before we even have the drugs.

It looked as thought we were going to be lucky when we returned to the area where patients wait to be taken home again. Just after we arrived so did the crew who brought us there. It’s normal that they are normally the ones who take you home again as well. No such luck, apparently we had been on their screen for picking up, but seconds before they arrived the screen changed and we vanished and were replaced by someone else. If we had been there just minutes earlier it wouldn’t have happened as the receptionist had told the control that we weren’t back yet and she had a patient in tears demanding transport there and then. We had to wait. It was just before 3 pm that we finally made it back here. Both our journey there and back was without a stairclimber, clearly there were too many people who needed them yesterday, so that meant two crews had to be at the house to carry me down and up again. I know it’s not nice for the drivers to have to carry someone like that, but for me, it was a million times better that way. It is much smoother, so none of those terrible drops that makes your stomach jump up into your mouth. I would prefer without a doubt that they always carry me.

Yesterday took a lot out of me and I kept telling myself that I was just tired, but from the point we got home right through to this morning, I have felt like crying. The stupid thing is, I actually think I know what it is about and it is really stupid, it’s the nebulizer we brought home with us. Somehow, despite the fact there are other small things like the mattress elevated and my perching stool, the nebulizer somehow feels like hospital equipment. It makes things feel as though I have taken a huge step into a world there is no way back from, especially when you add in my having to use my wheelchair. It feels that I am hitting a new level of disabled and getting here isn’t a good thing in any way what so ever. Every time I have entered the kitchen since I got home, those tears have tried to swell. Adam left the nebulizer in its box sitting on one of the counter tops. Just seeing it, is like some kind of cruel reminder that my home has taken one more step towards what I have fought so hard against, being anything other than a hospital environment. I know without a doubt that it won’t live in a cupboard, having to take it out twice a day and set up each time, just isn’t going to happen. It is going to find itself a spot to live in and to be used that is convenient, which means always on display, reminding me I am losing more than one battle. I haven’t cried, as I know without a doubt that I wouldn’t feel any better if I did. These are the kind of tears that run in your heart rather than your eyes and letting them escape that way, changes nothing.

Please read my blog from 2 years ago – 08/09/2015 – An intriguing lose

Strangely it has felt like a really quite and odd weekend, it has taken me a while to realise why and it’s simple, Adam hasn’t been doing overtime and is actually at home and yes, snoring. It has been a couple of weeks since he as been at home both Saturday and Sunday, not that him being……

6 thoughts on “One day changes everything

  1. From what I have read of your blogs so far I would say you are not a negative person, but it sounds like yesterday really took it out of you. As for that nurse well I’ll say nothing perhaps best.
    Look at the nebuliser another way it’s an aid to help you breathe hopefully to banish the “heart attack” like feelings, just like the wheelchair to be used as necessary not necessarily totally relied on.
    My view has always been have whatever helps so you can enjoy as much of your life as possible, and even do what helps you get through even if it not the “conventional” thing to do. It’s your life you are the one who has to cope with the problems ( not forgetting Adam of course), so do what suits you.
    Rant over, hope you can get over the tearfulness as you say doesn’t really help but happens too often.
    Have a good day.

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  2. CRY !!! CRY FOR YOUR LIFE UNTIL YOU CAN’T CRY ANYMORE. EVERY NEW AID YOU GET, MAKES YOU FEEL MORE DISABLED.IF IT MAKES YOUR LIFE A LITTLE LESS PAINFUL, THEN YOU HAVE TO ACCEPT IT: YOU TAUGHT ME THAT. STAY STRONG. TRY TO HAVE A GOOD DAY.

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  3. It’s no fun is it – having no control over these things – not wanting to give up thinking that somehow you’ll beat it. I don’t have MS, but I do know what it feels like to not feel well for a very long time and going through lots of crap to have those occasional moments when you feel good and it gives you hope. Through it all we have to find happiness and appreciation for the small things. I was able to get up and cook breakfast today. I went outside early in the morning and picked cherry tomatoes. Now I’m in bed blogging on my Nook. Late afternoon Ill get up and teach a piano student. Later in about 4attempts I’ll cook dinner ( I can’t stand up long) and I’ll look back at all I was able to do and be happy. We have to find happiness in the little things. In my head I wanted to do so much more. It is what it is. Smile. It’s hard to feel bad when you’re smiling.

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    • I have been a ray of sunshine in other peoples lives from so long that I feel doubly bad, as I am not the person who should be feeling this way. I know exactly what you are talking about as that is what I normally do. Yet here I am being flattened by a stupid machine and a set of wheels I’m not even using yet. Add in total exhaustion from going out yesterday and,I am totally unable to cope with the smallest thing not going absolutely perfectly. Hopefully a good nights sleep will bring my back to being more myself in the morning.

      Adjusting to the new, isn’t always a bundle of fun.

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      • It’s okay to give into it and go crawl under the covers. You’ve been through a lot. You don’t have to be super woman today. You can do that tomorrow! Sleep well and don’t let the bed bugs bite.

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  4. PAMELA, YOU ARE ALLOWED TO FEEL ANY WAY YOU NEED TO.THE FACT THAT, YOU TOO HAVE DAYS LIKE MOST OF MINE, ONLY MAKES US CLOSER…P.S SONNI, YOU ARE LUCKY THAT YOU CAN COOK A MEAL.I’M LUCKY IF I CAN CONSUME A MEAL. IT’S HARD WHEN THE HEART AND SOUL AND EVEN THE BRAIN SAY YES; BUT THE BODY, SAYS NOOOO WAY!!!

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