Post Exertion Malaise - A very foggy day

© yourachingart_cfs

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

The day after yesterday...

I struggled to get off to sleep due to pain and my head was hurting a lot after banging falling to the floor. Eventually sleep came though in the early hours.

I gave myself a lay-in to give my body a rest and was woken up to a FaceTime from my friend. I then called the Therapeutic Community (TC) just to let them know how I was and they was aware about my bad experience from another TC member who had read yesterday's body post. I still feel unsure going back to the TC as my seizures get int he way so much and I struggle physically to get myself through the day there (which probably isn't helping my seizures), but on the flip side I need the TC.

I just rested today - watching TV, writing a reply to a pen pal and sorting out my certificates to decide what distance learning course to do next - I've signed up to study 'Understanding Autism in Healthcare Settings'; even though I'm not able to continue volunteering at this moment in time I'm continuing with the courses ready for when I'm well enough to go back to helping out at the children's hospice. I'll post more at a later date.

I also did some practical things: 

• I managed to get a hold of my neurologist's (Professor Edwards) secretary and explained the urgency of his response to my emails and how my GP does't see FND as a "real" illness and is therefore leaving my care up to him. 
• I also tried to call the admissions co-ordinator a few times to try and chase up my video telemetry referral which was made in July but all I got was the voicemail, which is what I got the other week when I tried.
• I also called PALS (Patient Advice and Liaison Service) to raise a concern about my "care" in A&E yesterday. I sort-of gave up on contact PALS about my "care" in A&E as nothing was changing but after yesterday I decided to give it another shot and I've also decided that this time if nothing comes of it I will make it a formal complaint which feels a bit daunting but my "care" in A&E just simply cannot continue.

I also have my deliveries from the continence service and the pharmacy, though annoyingly my increased dose of Clonazepam wasn't in my tray so I had to call the GP practice and they didn't get back to me so I'm going to call the first thing on Monday morning.

Half the time I feel like my own personal medical secretary!

Now though for bed in my new zebra pj's and Harry Potter playing me to sleep.

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.

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!

Stickman Communication © by Hannah Ensor 

I have a form of Migraines 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 Action

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:

• https://www.migrainetrust.org
• http://www.migraine.org.uk
• http://www.migraineart.org.uk/
• https://www.nhs.uk/conditions/migraine/
• https://www.brainandspine.org.uk/migraine

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)!

Then in the evening I went to the second of eight season of a programme called Keys to Freedom (run by Mercy Ministries UK) which my church is running and wore my sparkly docs.

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 - 7th Feb 2018

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.

What a palaver!

Life when you have a chronic illness life rarely runs smooth. 

This weeks palaver is with my pharmacy. I get my medication delivered on a Friday to start taking them on a Monday morning and I have them sorted into a tray which makes things easier for my memory and medication compliance. (Now I'm wishing that I'd checked my tray on Friday) because on Monday morning I found that instead of 2 Gabapentin tablets 3 times a day I'd been given 1 tablet instead. Grrr! I checked my online prescription and yes it stated 'Gabapentin 2tds*' so I called the pharmacy and explained the issue so they sent the delivery driver to come and collect my tray for amending. At around 4.30pm the pharmacy's delivery driver retured with my medication tray; opening it only to find that no changes to my tray had actually been made! Queue another phone call to the pharmacy who told me it was all in order and the prescription they received from the Drs surgery last week stated 1 Gabapentin tablet 3 times a day. Queue second phone call to the Drs surgery who confirmed that I should have 2 Gabapentin tablets so they sent over another amended prescription electronically to the pharmacy. Then I made the third phone call back to the pharmacy to state that a prescription was being electorally sent over to them with the correct dosage on.


*tds means three times daily

So today (Tuesday) I called the pharmacy to see if they recieved the prescription and to arrange for the medication tray to be picked up for the second time round. Pharmacy stated that no electronic prescription hasn't been received! So I called the Drs surgery again to check that the prescription has been sent, to which it has and the receptionist gave me the barcode for the prescription.

I was supposed to be going out to see a friend who I haven't seen in a while today but instead I'm eating around for the delivery driver to collect my medication tray! (Annoyed doesn't cover it.)

So when the delivery driver arrives I have the barcode for the electronic prescription to give to him to pass onto the pharmacy (but hopefully they will have it by now).

I switched to this pharmacy as my previous pharmacy was a bit of a nightmare when it came to my controlled drugs, but apart from the odd hiccup this pharmacy has been relatively okay.

Hopefully the pharmacy driver won't be too long now to come and collect my tray and they pharmacy are able to amend my Gabapentin tablets so I can get off to my friend's house.

I'm writing this post as I wanted to share that life with chronic illness rarely runs smoothly, and all sorts of things can get in the way of our lives whether it be pharmacy errors, symptoms, equipment going wrong etc. 

Despite the problems I'm having I'm am feeling gratitude for:

• Pharmacy home delivery service
• That I have at least some Gabapentin to keep my symptoms at an okay level
• Having a day off from the TC and hopefully getting to see my friend at some point

*** UPDATE ***

Step-mum came home to take over the 'waiting for the pharmacy shift' so I was able to got out for coffee with my friend.

Pharmacy never turned up (well, they claimed they did but someone was in the house the whole time and we never noticed them). Pharmacy said to borrow tablets from other compartments in my tray so I get my proper dose and need to drop my tray in tomorrow morning when I'm out with my carer so it can be amended then.