One week on: The visit

The MS nurse hadn’t been here 5 minutes when he said just how much he could see the change in me. He is the second medic in under two weeks, to have said out loud that my health is visibly failing. I along with half the world refer to nearly all the conditions that I suffer with as invisible, clearly they are not. I had made a point of heading to my bed early yesterday afternoon as he was due here at 3 pm, a time that would normally find me in bed, I at least wanted to be sat up in the living room not lying in bed when the doorbell rang. Adam had taken the day off, so by the time it did, I was sat on the settee, with my chair parked within reach, just as it has been for the past week. Despite the fact that the whole purpose of Adam being here was to get to meet him and to listen to all that was said, he had hung around in the kitchen for a few minutes after he arrived, before joining us. Our discussion centered around the chair and why I had decided to use it to begin with then moved onto all the other aspects of how things had been in the past year. It is actually 14 months since he was last here, but clearly he was shocked by the change in me, as he returned to it several times.

So far, Adam and I between us have managed ever aspect of my care, but neither of us, especially me, know that the time that outside help is getting closer. The system in the UK at the present means that we will have to bring into our lives some people that I have a great revulsion towards, social workers. My feelings run deep as they have failed my family and me repeatedly over the years. Firstly when I was a child and I was removed from my Father’s care, firstly at his bidding, until they discovered that his claims of a teenager out of control weren’t the truth. The day that he called them in, I bore bruising, a broken nose and four fingers that had to be pulled back into joint when they took me to the hospital. He wanted me out of there, they didn’t want to leave me for a second longer in his care. So why my hostility, well after just over a year of living with a lovely Dutch couple, I had to move on as they didn’t feel they could cope with a teenager and a new baby. Looking back, I can fully understand that, but I was placed just aged 14 in the YWCA, with little support and no one to turn to. I felt abandoned with no one and nothing. The second, well if you want to understand that, I suggest you read this post, “Christopher”. Bringing in the very department that has failed me so totally in the past, does anything but fill me with joy.

Social workers are the only people who can firstly assess and secondly supply us with access to the funding to pay for the care that we consider is needed. They don’t fully cover the costs, we would also be means tested so they could access just how much we would have to pay towards it ourselves. Once assessed it is up to us how we spend that money. We can give the budget back to them so that they can simply supply us with carers to cover my needs, or we can sort all that out for ourselves, with the budget paid into my bank account. Something that right now, I quite honestly don’t know which would be our choice. I was perfectly honest and said at the moment, I don’t think that any outside help is needed, but I am also aware that that time is getting closer and I am open to the fact, if not the whole process, quite yet. He suggested that it might be a good idea to get the ball rolling, rather than wait for a crisis, which I agree with, but as I said, I know it is coming, but I also know that it is still months away, not just weeks. I believe that I will know myself when I am reaching that point, just as I knew that I had to make the move to my wheelchair from my feet. I am under no illusion that it will take several weeks to organize, rather than just a couple.

I hadn’t realised until the three of us were talking about all of it, that Adam had it in his head that he was going to be more or less forced by the state to give up work to care for me. Not once had he even voiced that idea and I don’t even know where he got it from. I was really glad though that he did so when there was someone else, other than just me, sitting there to tell him to get that idea out of his head. I honestly didn’t realise that he was picturing our future as him being my sole carer 24/7. My confusion was even more so as we saw the system in action when my friend Jake was caring for his father. Jake was at home full time, but that was due to him having a breakdown following the death of him Mother and the discovery that he was adopted. We had actually even been in his house when the carers arrived to put his dad to bed. So he had seen that outside care was there to help with anything that was required. The only difference was that Jakes dad got the care for free as he was over 65, an age that despite feeling it at times, I clearly haven’t reached. I just wish that he had discussed this with me rather than wondering around worrying about it. It must have been like some kind of monster hanging over him. I tried to ask where he got that idea, but he brushed it aside with his usual answer, that he didn’t know and as he is my husband, he just thought that was the way it would be. If nothing else came out of yesterday, I am at least glad that he is no longer thinking his future is to be tied to my side, alone.

As I had expected the nurse wanted to know just how my mood was. I knew it would come up, just as it has every time before, but with the move to my chair I was sure it would be discussed in more detail. It was at that point that I handed over partially to Adam, as I felt that if it came from him rather than me, then it would be clear I wasn’t covering anything. I can understand just how it has become an area that health professionals feel is an inevitable outcome of having a chronic illness, especially with my being housebound as well. As it always has, it turned into a conversation on the virtues of being online and blogging. With Adam being here, it actually was the first time though that I had the opportunity to sing one other value of blogging, the positive impact when it comes to marriage. I know that Adam, like many other husbands, worries about my health. My blog though has freed up our lives to just be like any other couple. Without it, Adam would be coming home from work wanting to ask so many questions, and I, like anyone else, wouldn’t be telling him everything. His constant questions would drive me nuts and my silence on the details wouldn’t be because I was hiding anything, it’s just that I wouldn’t think something to be worth mentioning. Here is the perfect solution. My health doesn’t dominate that precious time that all couples spend together. I write, he reads, simple, and we’re free to just live.

Finally, we had a detailed conversation about my wheelchair. I had to be direct about it, as although I had already told him how difficult I was finding using it in the house, he had swiftly moved the conversation onto other things. So I asked him directly about getting an electric chair and from Westmark, which is the department in Glasgow who deal with them. He didn’t realise that my chair was supplied by them as he thought it was far superior to their usual ones and that we must have bought it. I knew it was special, I had been given it in the first place as I didn’t have great strength in my arms so it was a special lightweight one, not the bog standard one. We went over the problems that I was having, how my arms were finding it often almost impossible and my hands were now almost constantly in pain. I also told him something I hadn’t mentioned to Adam, it is also causing problems with my COPD, I am getting breathless with it. Not to mention the problems I have with bruises and bleeding knuckles. All those details that I have been adding to my list of problems, everything that I felt were the reasons why an electric chair would change my life. This was the moment my first week in my chair had been leading to. He isn’t that hopeful that they will give me anything better. He said that in his experience, if you can move the manual chair at all, no matter how much pain, or how difficult it is, you won’t normally get an electric chair. He even thought that moving house would be an easier option, one which I explained wasn’t a possibility that we even had. Once again I told him what happened with the housing authorities that supply housing for the disabled. Because we own our own home, we aren’t entitled to any help, yes we can be on their lists, but we will never, make it on the points system to a level, where we would be offered a home. He wasn’t sure if he could do it, but he is going to find out about referring me back to Westmark, and what the possibilities are.

What happens now, who know. At least Adam has met and made contact with the person who is our information person, so he can turn to them when needed, if I can’t. I feel as I always do after one of these meetings, it has cost the NHS money, but it is the first and I am not joking, the first one that has had a point to it. Normally, it is just ticking boxes and I’m not sure what other purposes it has. Just as last time, he said that I knew more about MS and the system than even he did, a statement that says everything about the system I have learned to live within.

Please read my blog from 2 years ago today – 23/09/2015 – Exploring is no longer possible

It is strange how two days right next door to each other can actually be so different, yesterday passed without not once wanting to head off into the kitchen to grab yet another dose of Morphine. I wasn’t without pain, that really would have been asking too much but life was just as it normally is, pain but pain at a level where…..

11 thoughts on “One week on: The visit

      • I was diagnosed with early stage, single cell 1B lung cancer 4 years ago. It was fortunately discovered by accident during an ER visit for dehydration. Took 8 months of biopsy’s, test, & scans and they still were not sure so said come back in a year. Like, hello???? Told them I was not about to live with their indecision in my head for a year so requested that they remove the bottom lobe. They did and 6 weeks later they confirmed that it was malignant and that I had made the right choice. I required no radiation or chemo but way too much morphine as there was severe nerve damage. I am no longer on the morphine and it is much better and I can usually deal with it with over the counter meds., as long as I do not over do the physical activity. Just waiting for my 3 year cat and hoping it will be clear as 3 months ago. I am one of the luck ones, so far. Already lost 2 friends to the same procedure within the last 9 months. I live for the moment, the hour, the day, as nothing is promised. People do not understand until they experience it themselves or with someone they care for. I seem to live in my own world now as much as I can and have re-established my bond with nature and the simple things in life. Sorry, won’t ramble anymore…..today …haha !!!!

        Liked by 2 people

      • The simple things in life have an awful lot to be said for them. When you are a survivor of life you have a totally different way of seeing the world.I just wish we didn’t have to go through so much to realise how wonderful this world and life is.

        I hope that all goes well with your scan, the waiting is often the worst part of medical problem. If they could just do things and tell us within seconds, the whole thing would be a totally different experience.

        Take care πŸ™‚

        Liked by 2 people

  1. Anything I would say would appear cheap and rehearsed. I do, however, appreciate you, especially your honesty! I’ll say no more lest I further cheapen my already pathetic remarks.

    Liked by 2 people

  2. I DON’T KNOW HOW SCOTLAND AND THE NHS WORKS. THIS IS MY EXPERIENCE: IF YOU HAVE SOME CONTROL OVER WHO, WHAT WHY AND WHEN; THEN THAT IS GOOD. MY HOME CARE PROVIDER, JUST WALKED IN WITHOUT KNOCKING.TOLD ME IT’S TIME TO SHOWER AND PROCEEDED,TO VERY ROUGHLY BATHE ME..I CANCELLED HER “CARE”, AND PUT IN BARS.THEY ARE UGLY BUT THEY TREAT ME WITH CARE AND DIGNITY. YOU ARE SO INDEPENDANT AND PROPER,YOU NEED SOMEONE, THAT HELPS YOU, NOT TREATS YOU LIKE , THEY ARE DOING YOU A BIG FAVOUR. I HOPE YOU GET TO CHOOSE SOMEONE YOU LIKE OR IT BECOMES A TERRIBLE ORDEAL. SORRY FOR THE LONG COMMENT.I STOP NOW.

    Liked by 2 people

    • That is why I am not getting into the system a second before I have to. Yes, I am considering two bars, one by the loo and the other in our shower, where I already have a seat that just folds down from the wall. As you already guessed the look matters, but the harder bit is fitting them. Victorian houses weren’t built to have things hung on the wall. It is incredibly hard to​ get anything to hold. It took our builders who fitted our bathroom, three attempts to fix the fold down seat, it fell off twice πŸ™‚

      Liked by 1 person

      • Do they not have rotating caregivers? Obviously this individual is not passionate about their profession. Here in Canada, or I should say NS, if you are not impressed with a particular individual a different one will be sent out. I chose to move home to my parent’s house when they both fell ill, transforming both the dining room & living room into bed sitting rooms/and a mini hospital room with the assistance of the local hospital which loaned me hydraulic lifts and other equipment I required to give them proper care. I also enlisted some care-workers and trained with palliative care as I became the main 24/7 caregiver. I was very fortunate to be able to give something back to them as they gave me a wonderful childhood. Don’t get me wrong, they were not rich by any means but what monies they did have I used for their necessities to bake it the best possible situation. There was much conflict with my brother & sister as they wanted them in a nursing home and did not want what would eventually be their inheritance, however I am a different breed and wanted them to be together in their home for as long as possible, together. Neither one ever left the home and both passed from this world the way they desired within 18 months of each other. There are good caregivers out there but it seems you have not met the right one yet. It is very much about dignity but some do not understand that. Keep the faith and I trust you find one that gets it.

        Liked by 2 people

  3. IN ONTARIO, THERE IS SUCH A SHORTAGE OF MEDICAL PERSONNEL, THAT I HAD TO BE PUT ON A 1 YEAR WAITING LIST. I WAS NOT SICK ENOUGH. 3 UGLY BARS AND AN EVEN UGLIER CANE, HELP ME DO IT MYSELF. I GET TO KEEP WHAT LITTLE DIGNITY I HAVE…..AND THE HOME CARE PEOPLE CAN GO TO HELL……P.S 3 HOME CARE PEOPLE WERE GIVEN A BIG PIECE OF MY MIND,

    Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s