What Are Your Neuropathy Plans For 2019?

Today's post from brainlessblogger.net (see link below) is a slightly more optimistic one than we may be used to from this author. However she is, as always, completely honest about how her illness affects her and for that reason we can almost always identify with what she's going through. This article looks forward to 2019 - and evaluates her situation as it is and how she hopes it will be. It's something we should all do - try and find the plus points among the sea of negativity and try to form a plan to try to manage our symptoms as best we can. It's as she says...'we will survive' but for many of us it ain't going to be easy. Reading this sort of article at least reassures us that we're not alone.

Looking into 2019: goals and treatment
December 26, 2018 Nikki 

To check out my cruddy year: Chronic illness 2018 yearly review

But this about looking forward. So it was not the best year. I got more ill with this lingering vestibular condition that really had been a massive drain on my energy and the symptoms make it hard to function. It is a good idea I think to look back in order to look forward. So this is the forward portion of that post.


So I have some goals and treatment ideas to improve things 

Health

With my migraines I aim to see a neurologist in the new year to put me on a new medication for migraines called Aimovig which is a CGRP blocking med new to the market that holds promise since I am non-responsive to other preventatives. Maybe the other three will also be approved by then so we can choose the best one for me. Either way, a little hope there, eh?

For the vestibular symptoms which are both vestibular migraine and something up with my left ear, I will be going to vestibular rehabilitation in the new year. I am on a waiting list for the clinic in the city. I have high hopes they will help me get rid of this persistent dizziness, vertigo and disequilibrium that has plagued me for more than a year now. But I will totally take a reduction in symptoms. Even that would be very beneficial to my quality of life at the moment. I am currently on Clonazepam which really shouldn’t be taken long-term or three times a day as I have been using it, to just suppress the symptoms slightly. So I am hoping the treatment will go well. And maybe I can give up the cane if it works out well.

Chronic migraine and fibromyalgia wise I have been taken off of my slow release Tramadol. So back to daily migraines and a higher baseline pain for fibromyalgia that I had forgotten existed. The fibro pain is a lot worse than I had remembered. And chronic daily migraines are hellish. Just hellish. So not too keen on that. Higher pain is affecting my sleep which means the vertigo goes nutbars because it gets worse as the day is long… so at night if I stay up any later it is severely disorientating. There is nothing to do about this but hope I can manage the migraines with the new medication. Fibromyalgia is more… difficult. Exercise is the best thing which I cannot do with the vestibular issues or without the painkiller to reduce the pretty extreme pain of exercising. So I think, for now, I will just have to get used to this new level of pain. And ask my doc if I can try CBD oil.
Work/debt

Lack of work and waiting a year for short-term has put me in a real spot debt wise. Along with the two previous leaves from work that insurance didn’t pay for at all. So that sucks any savings you have made and puts money on those credit cards. If I can work soon that would be highly beneficial. If I can’t, well, I have a plan to work on the debt. I am not sure when I will be able to drive let alone work. It is just a Slow process with vertigo. I mean, even determining what type it was and getting to the ENT… all takes so long. And I need to have a budget for my actual income, which at the moment is nill but maybe I will get on long-term faster than I got on short-term, and not the budget of what I used to make. And, hey, if things get better and I make more money… bonus. But I need to decrease the debt and tighten the budget… I have already done what I could with the fundamental bills so they are less which helped a little. Anyway, either way, I have a plan of action. Just have to have Some income before I can get on it. So I hope in the new year I can enact the first part of that plan. 

Stress

I had some serious external stress this year. And I have to get that external stress is going to make me feel worse. So I am going to take care of my wellbeing in the next year. I got a gratitude journal for Christmas I am going to use every day. Helps with mood to focus on the good things. And practice some self-compassion for not being able to do what I feel I should be. Resting when I need rest. Self-care when I need self-care. All of these help with the stresses on the body and help us with resiliency to handle these external stressors.

In fact, resiliency is my new word for the new year. I have more of it than I used to and it is getting me through this rough period. Keep on keeping on, as I often say.

Don’t mind any typos in this post. I overdid the holidays and am completely spaced out and dizzy even with my medication.
Basically, I think we should all work on our overall well-being.
Think about what you can do instead of focussing on what you can’t
Make self-care a priority. You can’t take care of others if you do not take care of yourself. And self-care isn’t indulgent, it is fundamental to coping
Give yourself some self-compassion on those bad days when you cannot function. You are doing the best you can. And you have to rest and recover from bad bouts. Acknowledge that it is hard to deal with. We should not feel guilty or angry about not being able to function. We should tell ourselves sometimes there will be bad days and we need to recover from them.
Chronic illnesses ebb and flow. And so when they get worse we have to understand how to decrease activity (Epic pacing) and to rest when we need it, which may be a lot when the weather turns against us and the tide is high.
Think of things you enjoy doing and try to do a little of that. Or pick up a hobby you always wanted to try.
Socialize a little bit when you can, because being social is human nature and we need a little of it for overall wellbeing.
Take care of your emotional well-being as much as your physical.
Remember the rule of 1% improvements. So if you have goals in the new year remember to make them small and achievable. And when you achieve that, hold it to make it a habit, and then try another small achievable goal. Think of a goal… and break it up into 1% improvements to do through the year to achieve it. Basically, keep goals simple. Basic. And achievable.

And maybe we can all feel a bit better about our core selves. Our sense of self and self-identity can improve. Although we cannot do a thing about being chronically ill we can do the best we can using the coping strategies we have. It is a good time to think about any small improvements we can make to how we adapt and cope. And I hope that we all do. I hope we all have a good year coping with whatever arrows thrown our way.

It could be a bad health year. Like my 2018. But we have the endurance, strength, and resiliency to get through it. And we will, one step at a time, inch by inch. We will survive.

See also:

Chronic illness: Resilience

Gratitude

Chronic pain and self-compassion

https://brainlessblogger.net/2018/12/26/looking-into-2019-goals-and-treatment/