Friday 8 May 2020

#MEandMe: Week 1

Friday 1st May: Who am I?

Image description: 

Naomi with each letter being used to create a word: unique, creative, thoughtful, myself, determined. The image is decorated with stickers including a rainbow, typewriter, a photograph of peonies, and a cartoon zebra.

Saturday 2nd May: Diagnosis journey

I was officially given my M.E. diagnosis on July 4th 2017 but I'd been struggling with my health for a while before then. I was repeatedly going to my GP complaining of fatigue and medically unexplained symptoms and and each time I was just told I had Post Viral Fatigue Syndrome.

I used to get frustrated with myself a lot wondering why I was so tired all the time or why I had this symptom or that symptoms but not knowing what was causing it and I tried so many different things to help but nothing worked.

When I got my M.E. diagnosis it felt like a weight had been lifted as I finally knew what was wrong with me. However, I'd never really heard of M.E. much and I was given no follow-up support. So I was mostly left to work out how to live with M.E myself.

Sunday 3rd May: Describe M.E.

Wow this is a difficult one to write without leaving a dissertation!...

M.E. is a neuro-immune illness; it is a multi-systemic meaning that is affects different parts of the body including the brain, muscles, joints, digestive system, immune system, nervous system and energy metabolism system. M.E is characterised by post-exertional malaise (PEM), a reduction in functioning and a severe worsening of symptoms after even minimal activity).

If I where to draw a picture of M.E. it would be a giant colourful scribble with the different colours representing the different elements of M.E. This would include symptoms, the lack of understanding of M.E, emotions, daily challenges (e.g. getting out of bed, getting a shower), small wins, bad and good days, the positives and negative elements of M.E, the different treatments and management tools, medications etc etc etc.

Living with M.E. is like living with my life on pause and I'm just waiting for my life around you to start again as I've had to stop doing so many things because of my health.

M.E. is also very unpredictable. For example I can expect to have payback from doing an activity (payback is a flareup of symptoms following an activity) but I can't predict to how bad the payback will be. I can't also know when I'll have a good or bad day or what range of symptoms I'll have that day; when those symptoms will start and stop, if at all and on what rating of the scale that symptoms will be; how bad my fatigue and pain will be that day; how foggy will my brain be and what I will be able to do that day and so much more. 


Monday 4th May: Current View

I've not long woke up and I'm just doing my usual sitting up in bed to get my body used to being sat up after being laid down all night. This is important for me to do because of my orthostatic intolerance - basically my body's autonomic system doesn't work so well so things like sitting up I need to give my body extra time to do as otherwise I get dizzy and lightheaded which can lead to me passing out. So I normally sit up in bed for about half an hour (it really helps to have my mattress elevator for this) and do some bits like going through my emails and taking my morning medication before making my way downstairs for breakfast.

Tuesday 5th May: Symptoms 

This is just a short summary of my M.E symptoms...
  • Chronic pain inc differ types of pain
  • Muscle pain (myalgia) and muscle spasms/cramps
  • Joint pain
  • Neuropathic pain and symptoms
  • Persistent exhaustion and fatigue (not improved by sleep or rest - these just give your body a moment to pause s you can carry on as best as possible)
  • PEM/PENE - Post Exertion Malaise or Post Exertion Neuro-immune Exhaustion
  • Sleep problems (ironic I know!) such as broken sleep, insomnia, feeling more tired when waking up in the morning
  • Hypersensitivity especially to noise, light, touch and smells
  • Cognitive dysfunction, also known as 'brain fog' - difficulty thinking, finding words, memory problems, poor concentration, low attention span, organising thoughts
  • Feeling flu-like and having a permanent cold
  • Lowered immune system
  • Sore throats
  • Sensory disturbances such as a buzzing electrical sensation or a pins and needles sensation in my body
  • Muscle and limb weakness
  • Headaches and migraines
  • Autonomic problems (problems with the body's automatic functions such as temperature control, digestion, blood pressure - this leads to dizziness and feeling faint, heart rate etc)
  • Difficulty sitting upright and often having to have my legs elevated
  • Gastrointestinal problems
Yes, I know I said it was a short summary but this is it without going into explaining each symptom to you!


Wednesday 6th May: Daily Routine

Whilst I was in rehab the biggest part of of my treatment was giving me an established routine(called a 'daily plan') with alternating activity and rest periods with meals, snacks in-between.

Since coming home from my hospital rehab stay I have struggled with the morning part of my routine especially getting out of bed but I'm trying my hardest which is all anyone can ask for.

I try if possible to move around and be in different parts of the house but my bedroom is still the main place where I spend my time.

I was going to share with you my Daily Plan and even though I try to follow it as best as I can I've realised that there is not average day or daily routine as M.E doesn't have a habit of being routinely. I could wake up and feel so unwell that I spend most of the day in bed or I could wake up, feel fine but then get to that afternoon and I find I can't get up off the sofa as I'm so tired I'm almost catatonic.

I generally just take each hour as it comes.

Thursday 7th May: How I cope

❤️ Having a daily routine with regular rest periods
💛 Listening to my body and knowing my limits
💚 Pacing and grading
💙 Putting a timer on when I do tasks so I don't overdo myself
💜 Doing a daily mindfulness/meditation session
❤️ Practising self-care daily in small and bigger ways
💛 Eating well and keeping hydrated
💚 Massages for my muscle and joint pain and headaches
❤️ Distraction activities
💛 Having supportive friendships and family
💚 Focussing on the non-health parts of my life
💙 Having a healthy online life
💜 My faith
❤️ Turning positives into negatives

Friday 8th: Advice to others

  1. It's okay to cancel or limit plans
  2. M.E is different in every person
  3. Listen to what your body is telling you 
  4. Learn how to pace and grade
  5. Understand your symptoms and learn how best to manage them
  6. Tasks don't just include those that take up physical energy. There's also emotional and cognitive energy too that include activities like reading, talking or colouring for example and just like physical actives you need to be careful with those activities too
  7. Develop a daily routine alternating activity periods with rest periods and vary your day with activities that take up different kinds of energy
  8. If you are struggling with any aspect of your care such as you feel you are not being listened to or you're struggling to manage then get the support of an advocate 
  9. Get a good, supportive and understanding GP
  10. If you need to get your medication delivered and if you struggle with managing your medication ask your pharmacy or GP to put your medication into a medication tray (some pharmacies may use another name for these)
  11. It's okay to need to use aids and adaptations inclusion mobility aids, often it can feel like you're too young to be needing such things but they are there for everyone to use if they  are in need of them
  12. Balance your day out with activity and rest periods
  13. Become a member of organisations such as Action for M.E* and the M.E Association*. I recommend this as by becoming a member it gives you access to advice, information, guidance, latest research and support.
* Links to membership