The Fatigue of MS Which Passes All Understanding

It is hard to explain to people the impact of fatigue. I call it a "tsunami of fatigue" which leaves me treading water in an endless ocean, just keeping my head above the surface. Fatigue dictates my entire 24-hour day. It is not just physical, but also cognitive and emotional.

How fatigue has impacted my life

I am so blessed to have a husband who understands this. He now has Parkinson's Disease, so the constant muscle tremors he experiences sap his energy. For me, the fatigue has limited my ability to work, run a household, travel, and socialize. I was bullied out of my government position (no support offered to adapt or assist me) and spent the next 8 years caring for my dear mother (with dementia), first at home and then (following a minor fall) in a nursing home which a social worker insisted would be better for her, but were the worst 6 years of her life. I was with her 35 hours a week to divert her attention from the hell hole. There, she broke her other wrist and fractured her skull and her pelvis. So, my intention now is to never go to a nursing home.

How I'm trying to manage my fatigue

To deal with the fatigue, I am trying to build muscle (which stores energy). I now attend hydrotherapy 2 times a week and attend 2 MS exercise classes weekly. These wipe me out for the rest of the day and evening. I know what makes the fatigue worse for me. It's lack of sleep, heat, and too much alcohol. We have had to adapt our life goals to accommodate our health situation. My husband and I have also discovered cruising, instead of more strenuous holidays (we used to do a lot of train travel).

We're trying our best to adapt everything

We are renovating our house (elevator, new bathrooms, and kitchen, all designed by an Occupational therapist). We're also looking at the landscaping and removal of the useless pool. We don't want MS or Parkinson's to force us out of our home, so we adapt.

Changing up our diets and medication regimen

I am not on medication for MS as there is nothing that I have found which will assist my Primary Progressive MS. I take a cornucopia of non-prescription medication, such as biotin, magnesium and vitamin D, as well as a prescription medication for chronic endogenous depression. Ironically, given the diagnosis of PPMS, the MRI's showed no progression for at least 7 years. I adhere to the Jelenik and Wahl diets, which restrict intake of gluten, all dairy, all red meat and starch. The diet also keeps my weight in check, and champagne is NOT on the exclusion list!

I also have an acquired brain injury so my memory is terrible. Now that I have learnt to live with MS and the memory issues, if I could just get the depression under control, Life would be pretty great.

How MS impacted my social life

What the MS has also done is introduce me to a whole new group of people, specifically the ones that I've met at hydro and neurophysio movement classes. We do crafts, coffee and lunches together, and share tips on useful things and contacts we have discovered to assist in daily living. One other thing MS did was to sift out friends from acquaintances.