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For those with complex treatment regimes how do you balance treatment and life?

LouRoots8

I have a lot of health issues.

I have multiple chronic / rare diseases. In different organs. All require an element of treatment. My daily treatment is 8.5- 12.5 hours a day.

I’m finding it impossible to manage.

This includes,
nebulisers, chest physio, neuro - physio, stretching, medication, Cathers. NIV (non- invasive ventilator) Often these have to be repeated multiple times a day. I also need help getting washed and dressed. With almost all aspects of daily living. Cutting food. I’m often too unwell to do anything. I’m having regular TIAs and strokes due to my neurological diease.

Often by the time I have finished the morning routine I have start the afternoon.

How do I make it better or more manageable?

I just want to sleep. I just don’t feel I have any life.

Every team I’m under thinks they are the most important. They don’t realise the amount I have to do. I can explain it but they don’t get it.

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LouRoots8

@Teddybear12

In short I’m not getting what I need. Been in an ongoing battle with social care. I have just got a PA although it’s not enough hours. I need over night care.

I’m still waiting for a CHC assessment.

Even with the carer in place. There is just so much treatment I need to do daily. It’s never ending. I am just exhausted and I’m in so much pain. I have little medical management and every teams treats just their organ. It’s chaos.

The matrons have just come onboard and I hope they will come and help. Even if it’s just the management.

I’m under 22 teams and they all Contact though me.

My home is unsuitable and I’m awaiting to be moved but life is harder as I have nothing that is adapting to my needs.

My family can’t cope with my health needs and I’ve been Hank g to fight the entire system on my own of a long time. I’m drained.

I have dealt with complex health needs my whole life but I’m getting sicker and don’t know how I can keep juggling everything.

Things would be more manageable if the housing was sorted, the packaged improved and CHC funded as then I could buy in the care I need.

Thanks for your comment

chiarieds

Hi again @LouRoots8 - we've replied to each other a couple of times when you've mentioned Moyamoya syndrome, then more recently had a diagnosis of Moyamoya disease.

I often think if we could ever get all the specialists together in one room that we're under, or need, then we might have a better outcome.

Often you can see a specialist(s) who may be at the pinnacle of knowing so much about their expert speciality, but they don't step back & see the whole person. In a simplistic view point, when I was a physio student, we got patients referred to as a 'right shoulder,' or a 'left hip,' & even ones described as 'IDK.' The first one of these I saw, as they had problems with their knee, I thought likely referred to 'internal derangement of the knee,' but I checked to be on the safe side. Hmmm apparently it meant, 'I don't know.' From my personal experience, the best Drs I met said, I don't know, but I'll find out.....somewhat refreshing.

To me, best practice is to always look at the whole person.

How are things going, are you considering the neurosurgery offered? Have you been taught self catheterisation, & do you still have your good PA?

Is there a way to look at the regime of care you need, & put it into manageable chunks, so you have breaks in between? Quality of life is so very important, & as you're very educated about your multiple disorders, might this be a way forward? I can only say that we do indeed need to find ways to manage our disorders, & I may not have been in the least helpful, but hope you can find a way.

LouRoots8

@chiarieds

The biggest barrier to me is the professionals. They aren’t looking at all of me. They just keep adding treatments.

I do all the medical management myself. I self catheterise, do my chest physio, meds, insulin my carer helps with stretching. Washing, dressing, eating. I really am an expert patient. I’ve had to be.

It will get easier when I’m in the correct housing. With a care package that meets my needs. With the adaptions I need to make my life easier. Trying to get an adjustable bed. I don’t really want a medical looking one.

The plan is my carer takes on more.

So it will take time to get her up to speed. Then we can hire more people to help.

I’m hoping to get to a hydro pool and maybe could skip chest physio that day. As hydrotherapy really helps me. I was paying privately it was super costly. They said I was too unstable to go into the pool. I spoke to the neurosurgeon and he said I know myself best and can do it. I get a few seconds warning when I’m having a TIA. I’ve found some hydro pools a few miles away that are low cost. My carer is happy to take me.

I have to do the nebulisers but I’m wondering if I could mix up the physio.

My nebulisers take 50-60 mins. Chest physio wife NIV is 45-60mins. That’s twice a day. Plus multiple nebulisers throughout the day.

The self catheter is a pain. It takes 20 mins a time to drain. So if I do that 6 times that’s another hour. I wouldn’t want a permanent Catheter.

If I can have surgery i am definitely going to have it. I’m awaiting futher tests to see if my lungs are strong enough. As long as my lung function is over 40% I’m good for surgery. They are around 45-50 and I think if I’m optimised on treatment can get 70. Although my lung CT is showing more issues.

Right now I’m waiting for the hospital to admit for tests. They also are going to sort my Vision and sort out my neurological Medical management locally.

Danielle_2022

@LouRoots8,
I'm sorry to hear that you're having a hard time. When you're disabled, especially in multiple different ways, being your own expert seems to become second nature. This is made even harder to manage when these conditions are complex, since it means that there are less opportunities to access educated support. With that said, I'm so glad that you have plans in the future to rely more on carers, even if getting there will mean taking on the responsibility of teaching your routine etc. It's also great that your carer is happy to take you to a hydro pool, I hope that this eases things, even if only for a short while.

I want to echo what @chiarieds said about -- quality of life is so important. It can be easy to forget, I think, that you deserve the simple joys when health is such an unpredictable factor. Still, if there is a way for you to engage in these things for a small amount of time each day, I think that would really help. For example: even just being here and asking the question is a great step. It's my hope that you'll soon find solid friendships & look forward to checking in here as often as possible. But maybe you could also video call with friends and/or family, or attend online events. Also, sometimes even smaller things such as eating my favourite meal gives me a lift. Could your carer help with that? I hope that your journey into more accessible housing is as smooth as possible. Please don't hesitate to let us know if you need any help or advice with that along the way