Tuesday, 14 September 2021

Living with limited energy

When you have a chronic illness like M.E which limits how much energy you have it does have a massive affect on your life and how you adapt your life to live in the slow lane. How much energy you do or don't have is very individual from person-to-person depending on their illness. For me my M.E is classed as being severe so generally because of this I have to make the most of what little energy I do have each day and this varies day-to-day depending on if I'm having a good or bad day and other factors such payback from something I've done. What little energy I do have is very precious to me so I have to be very careful and cautious as to where I spend and spread out my limited levels of energy. Since I became ill over this time I've learnt how to live with limited energy and how to best manage the energy I have each day.

What many people don't realise is that everything takes up energy from getting dressed, brushing your teeth, washing, watching a TV program, reading,  listening to music, playing a game on your phone, any form of exercise. It isn't just physical activities that take up energy but mental activities too, even maybe something that brings up strong emotions may exhaust you.

teal background with white text reading being sick is exhausting on top of exhaustion this quote s by That Thing They Call Recovery
Like for most people with chronic illness/disabilities including myself my days are ever fluctuating and I experience good and and bad days. Depending on if I'm have a good or bad day this dictates how much energy I have and even within that I don't have a definitive good/bad day. I have great good days and okay-ish good days then I have my better bad days then my bad days where I'm crashed out in bed and really struggling. As a result I never know how much energy I'm going to have on any given day though my better days I will have more energy compared to my bad days where my energy levels will be depleted. 

This makes life pretty difficult as I don't know what kind of a day I'm going to have. Sometimes I can predict that tomorrow won't be so great if I'd done something that day that pushed my energy levels to it's limit but how bad the next day will be is a total unknown so it's hard to prepare for dealing with the following day.

Life with limited energy, whatever has caused that, is a challenge. Energy becomes something precious that you want to hold on to and you have to spend it wisely. This links in with Spoon Theory if you've ever hear of that?

I've found that regular rest periods throughout the day help keep my levels in check. Unfortunately reseting doesn't restore or restock my energy levels but it gives my body and mind opportunities an opportunity to pause which I find is much needed and I find the routine of alternating activity and rest periods help keep my energy levels in check, this is what I call my Daily Plan. Each day I have one main activity which I use my energy on doing; yesterday wasn't such a great day so my main activity yesterday was watching an episode of a boxset I'm enjoying. On a good day however I have more energy to do a bigger main activity. - I hope that makes sense? 

As well as my main activity I have low-level activity periods where I do activities that don't take up as much energy as well as spending my energy on washing, getting dressed, brushing my teeth, doing my hair - all the basics really which I do with the help from one of my PA's which make tasks easier and reduce my energy levels from crashing.

It's a very careful balance. Some other tools I've found helpful is pacing and activity management which is where my Daily Plan come in. Finding your own personal baseline is really important too, this generally involves working out how long you can do an activity for before you're energy levels drop and other symptoms flare-up. This baseline is different for everyone and may vary depending on the activity as well as if you're having a good or bad day.

My main advice to conclude this post is to see if you could do some work with an Occupational Therapist as I did to help you put together something like a Daily Plan. Take regular rest breaks; stop before you flop aka don't overdo it. Work out your baseline and put on a timer when you do an activity so you know when to stop. Learn about pacing and activity management including the traffic light system - Sickman Communications © have a great Pacing Pack which I have and I've found it so helpful including the traffic light post-it notes to plan my day and the Pacing book which taught me everything I needed to know about pacing. Write to-do list, this could be on your traffic light post-it notes, or on a list pad or on your phone (I love the reminders app on my phone). Also break tasks down so if you have laundry to put away do it in small stages, or ask for help - it's okay to ask for help; a helping hand can often save you some precious energy. Prioritise where to spend your days energy; if you're having a bad day it's okay to do very little - listen to your body. Finally since I've become ill I've learnt that things can be left to do the next day or week (unless it's super urgent and important).

Tuesday, 7 September 2021

More than just a bad headache! - Migraine Awareness Week 2021

This week is Migraine Awareness Week. Alongside all the other symptoms that I have from my different illnesses living with Chronic Migraines (which affect around 2 in 100 people*) is something that I've just had to learn to live with as challenging as it can be.

"Migraine is a severe and painful long-term health condition that 1 in 7 people live with" - The Migraine Trust

I have roughly 17-20 migraines a month but they vary so much. One day I may have a bad migraine where I curled up in bed in the dark feeling so nauseous and unable to move and that may only last a few hours or I might get a more mild/moderate migraine that lasts for several days, or it could be the other way around. The unpredictability is hard as I know when I've got a migraine coming on but how bad it will be and how long it will last for is totally unknown.

There are different types of migraine; I experience Migraine with an Aura (which affect 1 in 3 people who experience migraines*) so I experience a visual aura or hallucination (nothing like a psychotic hallucination). This visual aura may be something like feeling like a light is being shone in my eyes or I will see little white and black dots like fireflies flying around. For me my migraine aura carries on into main migraine stage so I will have the aura alongside the headache pain stage which can be horrendous sometimes when the two symptoms are there side-by-side.

As well as experiencing Migraine with an Aura I also have experienced a rarer type of migraine which are Hemiplegic Migraines - thankfully I don't experience these very often and they where quite terrifying when I first had one. Down the right side of my body it goes numb and tingly and my speech slows down and slurs alongside the headache pain; to some it may look like a stroke but the symptoms dissipate after a few hours.

The 5 stages of a migraine


I take a medication called Sumatriptan at the start of a migraine. There is preventative medication but my GP wasn't sure what was okay to be prescribed to me due to the complexity of my different illnesses and the medication I'm on. I did get referred to a migraine clinic but due to the pandemic I got a letter to say that they're not seeing any new patients - that was around 18 months ago ad I'm still waiting and I have no idea where I am on the waiting list so I'm unsure how much longer I'm going to have to wait to be seen. I'm so grateful to have access to free healthcare but when you have a migraine most days you just want the problem to be sorted.

Difficulty is access care and medication is the campaign by The Migraine Trust for this year's Migraine Awareness Week.

With my milder migraines I have learnt to function in a limited way and I do plenty of things to help when I have a migraine. Medication obviously - my migraine medication and also pain relief. I also find laying down in a dark and quite room helps. I've also bought a koldtec™Halo headband which I find really helpful. Inside it has pockets for reusable icepacks and it helps a lot and it is something that I would recommend.

I do have triggers for my migraines such as certain foods for example garlic, wheat and gluten. I also find that I get migraines when I've visually overstretched myself such as reading lots of small print (so reading I now find difficult) or if I've been looking at a screen for too long. I also get migraines when I'm tired or when I'm unwell (like normal people unwell or when my chronic illness have flared up). Another trigger is when it's my time around of the month though this is a little erratic so I don't have a clockwork monthly week-long migraine. Tiredness or feeling exhausted is also a trigger (so having M.E doesn't help!).

Having Chronic Migraines means that I'm sensitive to light so I wear tinted lenses to dull the light I'm seeing though my glasses. I also find that I can be sensitive to sounds and smells. My migraines also leave me feeling nauseous and I have a lot of headaches alongside the headache pain part of a migraine. All these symptoms overlap with my other illnesses so it can be hard to know what is causing what symptom or sometimes my symptoms will be like dominos trigging off one symptom after another resulting in things like migraines.


Organisation & Helplines

➜ The Migraine Trust - *statitics from this organisation
        ☏ Helpline

➜ National Migraine Centre - About migraines