Frightened about the my potential future

[MyFuturePlans]

I know I am being selfish and that there any many people going through much worse scenarios than me. However I am struggling at the moment and need to talk with strangers, as friends just try to comfort me.

My immune system is attacking my nerves and killing them. I had a period of decline in 2020 which put me in a wheel chair and had been seemingly stable until the last few months when I am back in decline again, more attacking more nerves and causing more damage and pain mainly to my legs.

I am weaning off my current immune suppression treatment, as I was taking the maximum dosage and my consultant said it had stopped working for me or maybe it never worked and my remission from further damage these last few years was just pot luck.

I am due to start an DMT infusion based immune suppression treatment with the hope it will help. But my consultant has been clear that he has no idea, if it will help or not. I might continue to get worse despite this new treatment. He has no idea what the future holds for me. I find this so frightening, my condition is so rare even the consultant has no idea

I am only in my early 50's, currently work full time and live with my husband, kids. I have so many questions swirling around my head

-How bad are things going to get?
-Should I prepare a living will for future treatment?
-What are we going to do when/if I lose the use of my arms?
-What are we going to do when/if I can't work? We use both salaries to live as it is (Yes, I get PIP already)
-I hurt so much, all the time. I can barely sleep at the moment and that makes everything harder
-Nerve pain is worse at night and hard to treat, the best I can hope for is a reduction in pain to manageable levels.
-I take so many pills and I guess I will be addicted to the controlled ones. I don't want to be an addict.

I am so tired. I am up for work at 7am and fall asleep at my desk, my DH wakes me up when he notices (we both work from home)
I have to lie down after work, to let the pain from sitting up all day (with legs raised) to level off before I eat and I read in bed from 7pm to 9pm before I attempt to sleep again.

I barely leave the house, as the wheelchair makes everything so hard and tiring.
I want to do more, be better, not worry as much....I don't know how to stop panicking about how bad will I get, will I die young, will I struggling on in pain for decades.

I want to watch my kids grow up and enjoy my life. How can I be more positive, do more and cope better with this endless pain

Bump

It's hard to know what to say, OP. The only immediate thing I can think of that might help is staying present in the moment day by day, because that is all any of us has, however much we may think we have a particular type of future ahead.
At the same time, yes you should make a living will; that is very important, and get power of attorney sorted out.
If in future you lose the use of your limbs then you should qualify for some extra support or may be able to get help from a charity or voluntary group. Have you made contact with groups who support your condition, or one that is similar enough for their input to be useful? Your family will help you too if it comes to that. You will still be yourself and they will still love you.
You could look at ways you might reduce your working hours. To spend the nights in pain and the days falling asleep at your desk will be doing you no favours. Would it help to move to a different, cheaper area perhaps so your salary is less vital? Ask your friends to brainstorm with you instead of trying to comfort you.

That sounds awful, I completely understand why you're so concerned.

Firstly don't panic about being an "addict" it's inevitable for some people who need long term pain management and isn't something to be ashamed of. You need that medication to manage pain, you should take it as prescribed.

Unfortunately I don't think anybody can tell you how much worse it will get or at what rate the disease will progress. If your doctor doesn't know who I presume is a specialist and has seen your test results etc then I think sadly it's a case of believing the specialists best guess.

I think you should definitely prepare a living will because you need to make sure your wishes are followed.

With regards to money is it possible to consider downsizing? Are there any practical steps you can take to ensure that if you're unable to work you have some security such as living somewhere more affordable so the mortgage is paid or smaller. Without knowing your specific lifestyle it's hard to say but effectively if you have bug luxeries like new cars on finance etc perhaps plan to cut back on things like that. Re budget how much you would have if you had to leave work and find a way to make it possible.

You could investigate some more unusual treatments. I had a really really bad injury to my sacriolac joint and it hurts for over a year. It was awful, the pain was through my lower back almost constantly. I took experimental peptide injections and the area healed completely within 6 months after no improvement for 18 months and the doctor basically saying that it wouldn't get better. I'm not sure if they have anything suitable for your specific condition but it might be worth looking. It's expensive.

There are pain management groups and people talk about their experiences and what has and hasn't worked for them. These might be useful for you especially if you're feeling alone. I think the NHS offers CBT type therapy for managing pain as well, if you haven't had it already I'd strongly suggest that. It can be very effective.

That sounds frightening and difficult. I’m really sorry you’re going through all this. There is some evidence that mindfulness and meditation can help with some of your symptoms- it may be worth finding a qualified yoga therapist to work with. FWIW if there is a society associated with your condition they may be able to help with costs, or some NHS trusts employ yoga therapists too. Feel free to DM me if you would like more information about this.

Have you had your vitamin D checked, my neurologist says I need to keep it pretty high to be in ‘remission’.

Also perhaps look at LDN on private prescription, been a lifesaver for me.

Thank you for your posts

I am putting mindfulness and meditation on my new "Lets be positive' list.
Physically I think yoga wouldn't work.

I am also adding "pain management groups" that sounds like good support option

Money wise I have to work full time, as we have four kids. Luckily all school aged before I got sick.

We are in the cheapest house in a cheap area, no saving in that regard
No luxury things here worth selling, old TVs and computers bought pre sickness.

Biggest expense is the mobility car, I have to hand back the current one, which I had for 5 years. I have took out a £6K loan to pay for the next one, but without the car, I couldn't work, so I can't not have one.

My condition is so rare that even the rare disease charity only had three sentences about it in their database. Therefore no support groups, no charities and no official treatment.

I am lucky that my specialist neurologist consultant could diagnosis me, up to that point my local hospital had no idea what was wrong with me.

I have had Vit D checked and it is fine. Despite that I take a multi vitamin, vit D and Vit B12 and iron daily, just in case.

Just googled LDN and it can't be prescribed to people taking opioid.

I have considered cannabis private prescription as it is meant to be good for pain but was quote £180 a month which is too high for me!

I will talk to my consultant again, see if he could give me an NHS prescription for something else

Oh what a shame re LDN.

I think you have to try to prioritise rest and calming your nervous system.

Almost impossible with work and family life though.

Yoga is much more than postures, and the postures can be adapted to chairs or even bed-bound practitioners - don’t write it off because of your physical limitations. But a yoga therapist (as opposed to a yoga or mindfulness teacher) will be able to work with you exactly where you are, supporting you to ease your symptoms as much as possible.

Hi OP

i am in a wheelchair and have chronic pain.

firstly, yes nerve pain is a fucking bastard. Has your consultant tried you on amytriptyline etc for control of the nerve pain? Amytriptyline has the advantage as well that it makes you very drowsy and helps with sleep.

i frequently have disturbed nights with the pain and it’s not fun.

do you have adequate pain management generally? (Drugs, not yoga although yoga can help)

I worked for twenty years but did eventually hit the point where it just wasn’t possible.

if you have paid into the system then you are entitled to contributions based ESA (employment and support allowance) if you can’t work due to illness. I see you already get PIP.

medical retirement can be a possibility. I rejected it as it would have massively diminished my pension.

I am so sorry to read this and I wish you all the very best in trying to find some relief from your pain and worries. I am not a medical expert at all but I wondered whether you had tried cutting out sugar completely ? It’s very hard I know but I know someone who did it ( they had a different condition to you though) and it made a huge difference to their overall health and well being. Ive often thought if I was in pain etc its something I would try

You said you need your car to commute, would your employer consider work from home as a reasonable adjustment for you? You could potentially save a lot of money on travel expenses and car repayments that way, you may also find working easier if you haven't had to spend as much energy just getting to and from.

If that isn't possible in your current role could you consider applying for a WFH based position?

Could your husband possibly seek promotion or retrain / take extra training in his current profession to gain a pay increase in the future or access to better paid jobs? This could potentially buffer the shortfall if you had to leave work and is worth thinking about now while you can still work as it may take time to achieve.

If you have a breakdown of your costs and expenses, the house is already cheap and you don't live in a very expensive area you need to figure out where your money is going. Have you done a household budget and then spent two months counting every single thing you actually spent that month? I grew up poor, like dirt poor, so I am very cautious financially even though I don't really have to be anymore. It's amazing when I check where my money is actually going, its easy to budget for bills, car, council tax etc, but you need to look for money that's slipping through the cracks. I know it's a trope but daily take away coffees or spends in that region do add up, I'm always surprised I can spend 40 pounds a week on drinks at the pub without thinking (I hardly drink! I don't go out late!). Vinted eBay etc might also be culprits. I recently cancelled Amazon prime for moral reasons and I haven't suffered as much as I thought I would, I've been buying less tat though which is a win. Check all your direct debits and subscriptions for things you may not use anymore or that you can cut back on. Without knowing exactly what you spend on it can be hard to advise, but if you think your potential earnings will be less in the future (egcif you have to go part time, or take medical retirement) it's worth making provisions if you can now. You do need some form of a plan. It will also make you feel more stable and secure if you have a grasp on what is happening with the finical side of things. Remember stress can make most conditions worse.

I only thought of yoga as 100% healthy people doing difficult positions to stand in or on the floor. So thank you for telling me they do more

A quick Google shows several local yoga businesses. I will ring them after the weekend, see who could help me.

Wonder if they could show me the best way of using the stretch strap, I bought...aiming to unstiffen my leg muscles?

What is it, CIDP or something?

Go and see a private physio that is good with neuro issues. Also maybe get a second opinion on your meds.

You don’t sound at all selfish, OP. I hope the good advice PPs are giving will help you xx

This list is of qualified practitioners, they’ll help you find someone who might have experience in your condition or one with similar symptoms.

https://themindedinstitute.com/find-a-yoga-therapist/

Also here- recommended by reputable organisation:

https://www.cnhc.org.uk/who-we-register#gsc.tab=0

Good luck, I really hope you can find some things that help with your situation.

Thanks @AlertCat

Presumably you have some rare kind of neuropathy, my sympathies op as they are extremely painful. Would maybe steroids and intravenous immunoglobulins help (ivig) to try to halt the attack? Is it small or large fibre nerves? You could look into Kratom if ldn not an option but it can cause organ damage. Yes, medical cannabis is expensive but would probably help with your sleep. Maybe you could qualify for a grow access project as on pip? It works out around £ 5.50 per gram so £55 if you get the minimum order of 10g. Red light therapy can sometimes help with nerves & repair, you can research the different devices but they are not all created equal. R-alpha lipoic acid also, but it must be R and 3-600 g pd seems to be the optimal dose for repair. Swimming is good for exercising with nerve damage as supports body weight. All the best op.

Have you got MS? I have had the immune DMT’s and they are fantastic!

That’s shit. I’m sorry you’re going through this.

I think everyone should sort living wills and financial and medical POA.

Ask if you can be refered to a pain management clinic.

@MyFuturePlans you are NOT selfish, you are in pain and that adversely impacts your life. 🌻

an excerpt from this article
High harm avoidance refers to a tendency to be fearful, pessimistic, sensitive to criticism, and requiring high levels of re-assurance.

Low self-directedness often manifests as difficulty with defining and setting meaningful goals, low motivation, and problems with adaptive coping.

Reported.

Clearly you aren't a lovely view Sharon 😛

I am not eligible for IVIG, it isn't approved for my condition.

It isn't MS but a rare neuropathy of uncertain origin

No idea if it is small or large fibre nerves, have to google that

I love swimming, I will put that on my list.

Grow access project sounds interesting, another thing to google