Re-Grieving with Disability

When you are chronically ill you go through a grieving process of

• the person you were,
• the things you cannot do any more and
• the person you will never become.

You learn to adapt to who you are though. You work on a new self-identity. And sense of self. Acceptance, of a sort. Acceptance that comes and goes, honestly.

But illness can come in waves. And it isn’t a steady sea. Functionality can tank. When it does we are left trying to tread water and sometimes faltering. Finding ourselves left out and trying to adapt once again– this time to disability. I am re-grieving.

Disability

Disability of any sort hits us extremely hard. Mine came in 2019 with a wall of vestibular attacks. On top of my chronic migraine attacks and fibromyalgia. And it was too much for my body and brain to handle. I went on long term disability while I waited to go to the vestibular clinic.

I didn’t get better.

I developed drop foot. Cognitive fatigue. Extreme physical fatigue. Leg weakness. Along with chronic migraine attacks and fibromyalgia. Then came the MS diagnosis in 2024.

That sums that up. Mostly. It doesn’t spell out the inability to function. The lack of mobility. The drop foot making short distances a bloody marathon. The pacing. The rest. The amount of rest. How some days are Just rest.

The mourning my Self. The grief of the life I had Before.

And maybe it didn’t seem like much a life looking in since I was down to part time at work. And, damn, with all that pain it was hard to maintain that. But I socialized a little bit. I worked a little bit. I had a few hobbies. I blogged a lot and ran my social media. I exercised a bit. I had a decent level of acceptance. My pain wasn’t managed but I had hope the migraine attacks might be in the future.

Then,

I wasn’t socializing at all. I wasn’t working at all. I became isolated. I lost my income and independence. I lost my ability to drive. I struggle to do stretches and walk fifteen minutes is my maximum. Max. I do have hobbies and they are ‘as I can’ because energy is a limited thing. It is a tangible, weighted fatigue on my mind and body.

• I grieve the ability to just get around.
• To drive.
• To walk.
• To move freely.
• I grieve having energy. Fatigue is part and parcel with Fibromyalgia but with MS added in there it is at a magnified level that makes it difficult to tolerate and some days impossible to function with.
• I wish I could sleep more than four hours

I grieve again. And I am trying to adapt again. To a different level of functionality with different challenges.

Remember these things:

Support system

It is important when you are grieving what you could once do, again, who you were, again, and the limitations you now have, now- that you keep your support network (friends, family and loved ones) close.

Validate and mourn

I believe in emotionally validating my grieving experience. I believe in writing about it and Feeling it. It is a valid experience to have. It is valid to experience this process more than once if functionality changes with time as well. Only once I let myself go through this process can I find some acceptance.

Adapt

I have to think of how to adapt to a life with certain needs, now. And in the future. Not just mobility needs but also significantly lower energy needs. I can’t drive. But nor can I take the bus- because of brain fog, balance issues, vertigo and the stops sometimes are not my limitation of 15 minutes walk time. Therefore, mobility wise for independence I need a taxi/Uber to get to where I am going, which means, less because of the cost factor (Unless I find an viable alternative that will accept and accommodate me). Other things to consider, bringing my cane everywhere. Things like hand strength and using my hand grip to open jars. Aggressive pacing of activities. Resting between activities. Changing the type of activities and breaking tasks up. Naps if needed, more than one if needed. Reminders and a planner to remember the numerous appointments I have. And more adaptations… as challenges present themselves. We adapt. We change.

We have things we have to do but we simply have to find ways to do those things.

What can we do

Think of the things we still can do and focus on them. On the tasks we still can do. On the hobbies we love that we can still do. Or do Differently. Pace them differently. Do them at different times of the day- like how I function better way earlier and worse later in the evening. Cognitive breaks are a great idea- like shifting from a physical to mental task, and vice versa.

My art is an example of something I still do but due to hand difficulties and likely the way my brain process information now- How I do it significantly changed.

Everyone’s style changes, of course. But mine has changed dramatically. Now it is extremely Expressionist although it always had a flare of it. I still do it. Just differently. And I will continue to do so. And there is nothing wrong with my style dramatically changing as I progressed- or the need for it to change. I can still do it and that is what counts for me.

I wrote about reading and how I can do that as well, but it also has had to change quite a bit.

A great deal of what I do has changed. In the time span it takes to do them, the focus it takes to do them, the amount of breaks I take during them, the time of day at which I do them, how I do them. All changed. The duration I can do them for.

But focus on these things that give us some joy. Some pleasure. Even if how you do them changes, if they bring you joy, then do them.

So tired

Grieving like this hits me because I am so very tired. Cognitively tired and can’t do the things I want to. Physically tired and, can’t do the things I need to. I flee very limited. And I have to give myself time to process these feelings. It is just a normal thing to feel and go through.

When your life feels very small for a time. And we have to ever so carefully nudge our limits as we adapt and focus on the things we can still do. But the grief is there. It is just there for a time.

When you feel the Ultimate betrayal of Self