My name is Kathy. I am relatively new to being an unpaid carer and it took me some time before I even would call myself such and come to terms with this new chapter of our lives. My hubby was diagnosed with primary progressive multiple sclerosis in 2019, aged just 51.
I have started writing a blog all about my journey, with a hope that it not only helps me, but also others who may be able to relate, as carers present or past. Hopefully it will be a help on some level, or at least a comfort other people on a similar journey.
My blog is on my Facebook page which is called ‘My blog’ (username Katunpaidcarer) if you wish to take a look. But extracts are shared here too.
Well, here I am again. I have been meaning to blog for the last few days, but one way or another, it has not happened.
I started a new job a couple of months back, doing relief work, and TBH a lot of my time has been taken up with training, of which there is lots! And some shadows. I haven’t yet done my first official shift. I was supposed to last Saturday but due to home life it did not happen. Those that know hubby will have a better idea of what has been going on.
It actually started on Thursday night, this ‘shot out the blue’. We have learnt to expect the unexpected with MS and hubby had been struggling with the heat prior to this point and he had not long had the news he will never be going back to his place of work, due mainly to the fact he had had so much time off this year for his disability.
A decision as to the money side is still in the balance, but he goes down to half pay shortly. But ‘the shot out the blue’ so or speak or ‘curve ball’ as hubby calls it, was this: on Thursday night while I went out (I usually go out every Thursday night if I can) his health suddenly took a turn. I came back to him in excruciating pain. Already exhausted from running a ministry that night, I then was incredibly worried for him.
It was around 11 o’clock at night at this point. He could not lie down flat as he was in agony every time he tried to lie down, this was worse because he was already fatigued and needed sleep. We tried propping him up with pillows, at this point I rang 111, and called an ambulance. His pain was down his right side – it was showing more severely round the flank area, but because there was some in his chest also it was counted as an emergency. Before we knew it we had a first responder at the door and about half hour later the paramedics arrived. I was impressed! I had not expected them so quickly.
They spent time doing all the usual obs. M had already taken some painkillers but they were not touching it. The three of them gave M a choice and he decided to stay home until morning, but they gave him a number to ring back to get through for an ambulance straight away.
One of the guys was asking me all about his MS and how it affected him. It was good to know they were being so thorough. After they went M had a terrible night, he tried to sleep upright on the sofa but to no avail. He called the ambulance this time, and again the wait was not too long.
After obs they asked M again but said if he waits for a doctors appointment in the morning, chances are they will send him straight to hospital. We decided hospital was the right option – there was only so much paramedics can do on the ground.
Once in the ambulance they gave him morphine for the pain. Then began our day at RUH, and it was so hot in the hospital! Oh yes, it was doctors strike that day too! So in A&E after been put in a cubicle we saw a consultant (having waited quite a while). She was very friendly and after examining M really thought because of how it was presenting it was gallstones.
On that assumption he was sent up to a holding surgical ward where it was stifling hot and the waiting was endless. Before this, M had had an X-ray and bloods, but after the bloods came back normal concerning gallstones, on the lower X-ray they detected shadowing on M’s right lung. So they took him to X-ray his chest. It confirmed pneumonia.
Suddenly it made sense; difficulty in breathing, he was doing much shallow breathing, pain when breathing in. Stabbing pain from front to back. Poor love it turned out to be a severe case of viral pneumonia. Then the wait again – the ward was poorly attended to and he was given paracetamol and codeine. To begin with the morphine was working, then it started to wear off and neither of the drugs were touching the pain. Surely I thought, he needs anti-inflammatories?
But when the consultant finally came to see us, late afternoon, he refused because of interaction with his antidepressants. In amongst the waiting for the consultant, I popped out to pick up our son from Bath station and fought the Friday afternoon traffic in Bath! Fun!
Once the consultant had been they gave M some hospital food, but my son S and I were really hungry by this point, more waiting. We asked since the doctor had prescribed antibiotics and pain relief could we go home? So S went off the find a wheelchair and we waited for them to put his meds together. It really is hurry up and wait in these places! We hit rush hour time coming out of Bath, so we literally crawled all the way out of Bath.
After picking up a takeaway near home it was gone 7pm by the time we walked in the door. I was beyond exhausted! Having S around was a real help, and comfort to myself also.
M had a weekend of pain and trying to rest. It was Father’s Day on the Sunday, so because of the heat I cooked the roast chicken the day before and did salad. My daughter came up for the afternoon. This lifted his spirits a bit, but the pleurisy in his lung was getting excruciating, like a sandpaper effect within the lung.
After another bad night and M decided we would have to go back to the hospital. Because he had an appointment in the morning, we rang up and I took him for the afternoon. Thankfully M was given a number for the right ward (on the Friday) and we bypassed A&E. After another X-ray and bloods, they said the infection had halved – though still nasty, it was a positive. But they realised the ‘snap, crackle and pop’ as I named it had got considerably worse and this was what was causing his pain.
This time the consultant had his head screwed on! After a chat he went off to look at all M’s meds and came up with a plan. He prescribed M strong anti-inflammatories and a protective drug for his stomach to protect against the interaction of the drug with his other meds. At this point I was like ‘thank you’ in my head! Such a relief, why could they not have done this Friday?!
48 hours later M was already picking up and acting more like his normal self. He was able to sleep and actually had a 12 hour sleep following, which is so important for healing. I am thankful to God because so many have been praying for him and for us…
But, and there is one, I found I went into ‘care’ mode, i.e. I left how I was feeling behind, shelved my feelings even though I hated seeing him in so much pain…I had to be strong. It was days later it truly hit me and the emotional exhaustion was huge. I did have a brief moment in the hospital on the Monday when a nurse asked if I was alright. I always struggle with the question of how I am… and could feel myself start to well up, So I went into the waiting area for a bit and did some deep breathing and then sucked it up again…it was later in the week the emotional hit came.
As it is I am having to come to terms with the fact M will be in the house now an awful lot, but on a permanent basis, not temporary. But I will leave this for a future time. Today M is off to a men’s weekend but not camping, staying off camp. I am giving lifts, but happy he can now go. And thankful. I can’t fault the paramedics care, both times. So hugely thankful.