Fatigue – not like being tired!

Just as the title says, fatigue isn’t remotely like being very tired. I’ve discovered this in recent months.

Alt Text: A black & white photo of a middle-aged white woman. She is lying on a pillow with a printed dot design. She has shoulder-length hair & she is wearing a small, silver nose ring & a leopard print pyjama top. She looks into the distance, solemn.

Chronic fatigue

The effects of chronic fatigue are much like this: after you’ve showered, you have to sit on your bed for 10 minutes before attempting to dress yourself. I thought I understood it until Cancer-related fatigue came & kicked my ass.

I’ve had a few changes in recent months, mainly driven by a swap to different medication. I was on an incredible high after being in Breast Cancer Now’s ‘The Show.’ Then I went on a very active holiday to The Lakes & I was away working at Falmouth University. Yet those things shouldn’t have exhausted me. Usually I’m as right as reign after a couple of days of rest. I’ve had another Zometa infusion & two weeks off from work to recover, but that’s usually enough convalescing time for me.

However, during the first couple of months when one medication was leaving my system & another one was entering, I’ve been experiencing periods of insomnia, alternating with terrifying & gory nightmares. Now the nightmares have turned into prolonged bouts of sleeping. Sometimes I’m struggling to keep awake in the early evenings & at weekends.

My old friend ‘anxiety’ has returned with a vengeance & they’ve started playing cruel tricks on me, messing up my head.

At my annual clinic visit for my impairment, the consultant diagnosed me with lack of vitamin B12. I was really quite shocked. I must be the only person to give themselves another condition whilst trying to eat more healthily! I haven’t really changed much in my diet, I’ve just cut out a lot of red & processed meat. I’ve always been allergic to fish & eggs, & I’ve avoided dairy and milk for at least 20 years. The only big change that I’ve made is eating & drinking more fresh fruit & veg from my local market.

At first, the consultant wanted me to start on three vitamin B12 injections a week at my GP practice. I can’t face that with the level of needle phobia that I have. Plus it’s hard enough getting booked in for my monthly injection, let alone if I was trying to access the GP every few days! I asked the consultant if there were any alternative ways of taking this medication & she recommended tablets instead – although she warned that it would take longer for my B12 levels to come back up again. I’ve taken the tablet option but I might have to bite the bullet & get the injections going.

Fatigue is horrible. I think it particularly gets to me because I like doing stuff & keeping busy. However, doing most activities seems overwhelming at the moment, so I’m having to work very hard to motivate myself. Even whilst I’m writing this blog, my mind is wandering & I’m taking prolonged pauses in between. I’ve not been on any big clothes shopping trips & I haven’t decided whether to go to one big London festival in August. Attending Notting Hill Carnival is completely out of the question for the first time that I’ve lived in the area. Instead, the smaller festivals are more appealing to me, especially local ones. I’m just doing two small festivals this year (Ealing Blues Festival & Primadonna). Even more surprising is that I couldn’t face going to Depeche Mode, Pulp or Blur this summer. Three of my top favourite bands. I’ve missed parties & gatherings as I’ve been flat out on the sofa or in bed. It’s all very dull & it just won’t do!

Chronic fatigue is a big part of my impairment & the impacts increase as you get older. I’ve never really found a way to manage it properly, I tend to just push on through (I don’t recommend anyone does this though) because I’m useless at pacing myself. I thought I’d got away without having Cancer-related fatigue because I wasn’t tired after radiotherapy. In fact, I painted the shed with my boyfriend in between my Lumpectomy surgery & the radiotherapy sessions because I was so bored with doing nothing! But three years on & the situation is very different; coping with a severe lack of energy isn’t something that I was expecting to do.

About a month ago, I embarked upon a journey to sort out stuff like getting the Housing Association to stop my garden back wall from falling down, sorting out the damp & mould in my flat, getting a new manual wheelchair & getting an O.T. (Occupational Therapist) to assess me for some new equipment now that my mobility has changed. If you’re disabled, you’ll know that getting all of the above revolved is an absolute nightmare because support services & Housing Association repair teams are monolithic in their process & will do everything not to help. However, it turns out that having a cancer diagnosis as well as being disabled, bumps you a few more notches on the waiting list! I can’t get excited though, it’s a huge waiting list.

I spoke to my GP about being overwhelmed & he suggested that their Social Prescriber got involved. His suggestion was that they coordinate everything so that I didn’t have the burden & worry. That was over a month ago. This person hasn’t been in touch so I’m doing it all myself. I’m already in the midst of getting a number of things resolved.

But this comes at a cost to my physical & mental wellbeing. I’ve had to forego the nicer things in life so I can conserve my energy for recalling details, such as appointment dates, measurements for wheelchair commodes, all the medications that I’m on, etc. These are all details which I haven’t got a hope in hell of remembering now I’ve got raging brain fog!

I’m showing workmen around the flat & jumping around like a performing clown to show O.T.’s what I can (or more like, can’t) do. I’m telling them to wear masks & other appropriate PPE whilst in my flat (yes, even being in the CEV group doesn’t guarantee that visitors will accommodate you).

And it’s so damn daunting dealing with these people!

I’m hoping that all these things get resolved & the fatigue decreases so I can enjoy more of summer 2023 & I can have a gentle easing into Autumn.