Post Exertion Malaise - A very foggy day

Today has been a very tired, sleepy and brain fogged day.

"Post-exertional malaise (PEM), or post-exertional symptom exacerbation, describes a delayed and significant exacerbation of ME/CFS symptoms that always follows physical activity and often follows cognitive activity.PEM is a highly characteristic clinical and diagnostic feature of ME/CFS. In some respects, PEM is an illness within an illness."  - M.E. Association

The onset of PEM typically takes 24-48 hrs. Today's PEM is from Thursday's seizures.

I sleep in until lunch time (accidentally) then forced myself to get out of bed to try and help with sleep hygiene (though I would have loved to have stayed in bed all day). I've literally had to drag myself through the day. Putting on some comfy "day clothes" - jersey harem trousers, a baggy t-shirt and a cardigan. (So basically day time pj's). I then got myself downstairs and took my meds and got something to eat and drink and the lay on the sofa with my heat pad as my lower back is still spasming and half slept/half watching the TV. I did manage later int he afternoon to play a couple of rounds of Rumikub (an game) with Dad before retiring back to the sofa and my brain was fogging up and my speech was slurring. I then went back to laying on the sofa with my heated with the TV for company. Next task was to get up for tea and we had company which took a lot out of me and after a while I returned to my comfy setup on the sofa.

I just thought I'd do a little post before heading to bed and hopefully reading this you'll have learnt a bit about PEM.

The thing with PEM is it's always a catch-up day. Every day is filled with PEM from something, it is just that some days its worse than others. Days like today are my bad days when my symptoms and fatigue and functioning levels are worse where as I get other days where I can push through it.

"PEM causes intense exhaustion as well as an upswing in other symptoms that last for at least 24 hours after physical exertion. That may not sound so unusual to those unfamiliar with it — after all, we all need time to recover after a tough workout.
When it comes to PEM, though, little about it is normal or familiar to people without ME/CFS.
It's not just about overused muscles or needing a little extra rest. 

PEM can range from moderately stronger-than-normal symptoms to completely disabling. In a mild case, the person may have extra fatigue, achiness, and cognitive dysfunction. In a severe case, PEM can bring on intense flu -like symptoms on top of extreme fatigue, pain, and brain fog strong enough that it's hard to even form a sentence or follow the plot of a sitcom. 

That's hardly what the rest of us go through after a hike or a trip to the gym. Also abnormal is the amount of exertion it can take to put people in this state.
As with the severity, the exertion needed to trigger PEM theories case-by-case. For some, it might kick in after a little bit of exercise on top of a day's regular activities. For others, is incredible as it may seem, it can just take a trip to the mailbox, a shower, or sitting upright for an hour." - Very Well

Pamper Afternoon

After checking out the local college's salon getting my eyebrows waxed a few weeks back my carer who was with me suggested I should book myself in for a little pampering session.

So with the help of my fabulous carer today I’ve made it out to the salon to get my make up done, have a conditioning hair treatment and get it curled and braided all for £8.70 and I really enjoyed myself, especially the hair part and I'd definitely be booking in again!

I'm now utterly exhausted now and need a nap but at least I’ll look like sleeping beauty. I feel much more sparkly after treatment myself. Just goes to show how a little papering and self-care can go a long way to help you feel a bit brighter again after a tough few days of seizures and other bits a pieces going on.

The finished result

Recovering - 17.02.2018

I've had an okay day today; nothing special.

I'm currently recovering from a seizure when this quote popped up on on my Instagram.

Sometimes I feel completely defeated by my illness. I get sick and tired of being sick and tired. 

I'm feeling much better than I did 3 hours ago.

It was just a normal evening. We have family over and we was haiving a film night when I started having clusters of myoclonic seizures and I felt my aura come on. Dad got me upstairs but I didn't;t quite make it to my bed. Instead my brain decided the landing would be a good place to have a seizure instead. For half-an-hour I swung between tonic-clonic seizures and unconscious full body myoclonic spasms. Dad kept getting me to squeeze my finger to check how conscious I was. Even I came round still spasming and Dad got me my medication, administering it to me. I'd lost all use of my muscles so Dad scooped me up and carried me to my bed. He pick on Chicago Fire to keep me company and as a distraction and kept popping in to check on me. He's just come to give me my night time meds and I felt the need to write a blog post. My muscles are still weak and I'm still a bit brain fogged so typing this is a little frustrating but "At the end of the day we can endure more than we think we can." - Frida Kahlo

For now I must be patient, let my body recover and rest.

Hemiplegic migraines

So I thought I'd write a post about Migraines today as I'm recovering from one currently. Thank goodness for Sumapriptan and Cyclizine and pain relief meds and naps!

I have a form of Migraine called Hemiplegic Migraines.

What is hemiplegic migraine?

Hemiplegic migraine is referred to as a “migraine variant”. The word hemiplegic simply means paralysis on one side of the body. A person with hemiplegic migraine will experience a temporary weakness on one side of their body as part of their migraine attack. This can involve the face, arm or leg and be accompanied by numbness, or pins and needles. The person may experience speech difficulties, vision problems or confusion. This can be a frightening experience for the individual as these symptoms are similar to those of a stroke. This weakness may last from one hour to several days, but usually it goes within 24 hours. The head pain associated with migraine typically follows the weakness, but the headache may precede it or be absent." - The Migraine Trust

I usually get a pre-migraine headache or warning, which is when I take my Sumatriptan which is a migraine medication. Hemiplegic Migraines can be quite scary, both for me an other people. I hate loosing control of my body and speech and the pain can become unbearable at times - every tiny movement of my body is like a huge stab and I throw up (sorry TMI!) and the smallest noise or glimpse of light is horrendous. I've sort-of gotten use to attacks now, and have a good management plan though I'll never grow for of them that's of sure!

My Migraine go-to's are:

• Bed

• Forehead cooling pads

• Darkness - either wearing tinted lenses or an eye mask. My Dad also installed a dimmer switch in my room so I can have better control of the lighting.

• Medication including pain relief, anti-sickness and Sumatriptan

• A sick bowl *yuck*

• Lots of pillows to hold me in place, esp with my muscle weakness I find it hard to hold myself in a comfy position as I'm a bit floppy

• My Stickman Communications © cards

• Ear defenders to keep things nice and quiet

• A tumbler of juice to ensure I'm topped up with fluids

Now to just to rest up and recover!

Migraine vs Headache video 

Migraine Facts:

• 1 in 7 people suffer from Migraines

• People with Migraines experience on average of 13 attacks each year.

• A migraine can last for between 4 and 72 hours.

• Migraine affects twice as many women as they do men.

• There is no cure for migraines, only management of attacks.

• The exact cause of migraines is unknown, although they're thought to be the result of temporary changes in the chemicals, nerves and blood vessels in the brain.

• There are many possible migraine triggers that have been suggested, including hormonal, emotional, physical, dietary, environmental and medicinal factors.

• There are many different types of migraines.

Useful Links:

• Migraine Trust

• migraine.org.uk

• migraineart.org.uk

• NHS UK

• Brain & Spine

An okay Day

Yesterday when I got home from my appointment with my GP I treated myself to some new sparkly Dr. Martens - they're an ombré effect of differs colours . I'd been waiting some sparkly Dr. Martens for a while and I wasn't in need of a pick-me-up so it seemed a good tie to treat myself and I rarely do that. Plus it was only £1 for next day delivery so the arrived today and I LOVE them!

This afternoon Dad and I also got out the house for a bit which was nice. I had to drop a water sample off at the GP to test for an infection as i've been having a bit of suspected kidney pain. We then went to get my bus pass renewed so I can try out my anxiety levels with using Phone 'n' Ride to get me home from the TC to try and save me a bit of money. We then went to Next to return some jeans and I ordered another pair to arrive tomorrow. Finger crossed the'll be what I'm after as I've been wanting some grey jeans for ages and I've just had a string of bad luck trying to attain a pair recently.

We then came home and I did some jobs and then it was pancake time (it's Pancake Day, or Shrove Tuesday today by the way and the video is of my crazy Dad making them)!

So a bit mundane but it was nice to get out the house for someone that rarely leaves the house for something that's not medical and it was nice for my new docs to arrive too.

"Invisible" - by Lisa Walters

I've just come across the beautiful spoken word poem via Instagram ad it's one I could relate to so much and I wanted to share it wth you. Hope you enjoy it as much as I did...

Send a Card to a Friend Day

Today is 'Send a Card to a Friend Day' a quirky event that I came across. Although I regularly send letters to pen pals Today I sat down and wrote some cards out to friends who I don't regularly write to to say hello and let them know that they're in my thoughts and to send them gratitude for being in my life in some way shape or form.