Tuesday, 18 April 2017

I look fine. I am not fine.

M.E. is a silent evil. It moves in the shadows and is barely talked about.
I don't think the people I see all the time understand, and I'm not surprised. This disease had been ignored for decades. Until recently, most doctors would tell you it's a psychological condition. It is not.

So, here's the deal...

If I am active, even for a small amount of time, it makes me very ill. Just like having the flu but without getting a blocked nose, I feel swamped. My limbs get heavy, I'm drowsy and trying to move feels like I'm wading through waist-deep mud. I feel weak, I struggle to lift my legs on stairs, I dont have the strength to stand up without help, I lean on any surface I can. I lose my grip, like a stiffness in my wrist and fingers. This fatigue sometimes doesn't lift for days, even after a few good nights' sleep. I often have blurred vision, even with my specs on.

(I think this is the most misunderstood part of the disease. I've been learning about M.E. for months and I still don't know exactly what is "too much". Anyway...)

If I don't rest, the exhaustion leads to pain. I experience shooting pains in my limbs (concentrated mostly in my joints) and a lingering ache like they're being bashed in a car door.

If I don't rest and battle through the fatigue and pain, I experience cognitive impairment, my brain starts to shut down, it's called brain fog.
This is the saddest part of it for me.
I forget words I'm trying to say, or say the wrong word entirely (off/on). I can feel the word on the tip of my tongue but it just won't come out. I forget what I was saying in the middle of a sentence, I can't process what someone is saying, I can't answer a question. I feel like a child. I get confused about bus numbers and flag the wrong one down. Sometimes I mix up numbers. I want to say 27 and fully mean the number 27 but I'll say "seventy-two". I sometimes miss letters in words when writing, I'll leave enough space for the missing letter and I'll only notice when I read it back to myself.

If I don't rest still, I have experienced blackouts. Once in work the room span and I fell. At home, I'll lay down to ease the light sensitivity, the headache, the confusion, and I'll wake up hours later, sometimes the middle of the night.

Even I forget it all until I try and explain, my reality is a life in bed. I wake up with pins and needles in my limbs and it can take a while to stretch it off. It's the same whether I get 5 or 10 hours of sleep. I stay in one spot at home and keep myself busy in a seated position. I plan trips to the kitchen like I'm carrying essentials for camping.
I only leave the house for work which is usually a struggle. I've stepped down from a role I had worked very hard for and I loved doing, I now work part time. Thankfully I have some exceptional work mates and my bosses are considerate. My close friends are all so busy themselves, they willingly agree to a catch up involving a sofa and a cosy blanket. I usually rely on home deliveries with online supermarkets. Working less has diminished any disposable income so the days are long (I've started reading Lord of the Rings for the first time, it's excellent! Just finishing the first book!). It's quite a challenge trying to get from A to B without regular bus fare or the ability to walk without rendering myself with the drama described above.

I had always been a typically busy person. Plans after work, out on weekends, I love the outdoors and sunshine the most. After living indoors for the better part of last year, I'm not surprised my GP told me my vitamin D levels were low. I miss going outside and doing what I want, without planning at least a day's rest afterwards. It's a daily challenge and I'm still learning about what my new "normal" is.

Most questions are welcome but no, I am not depressed, I am not having one bad day, I cannot just jump in the shower and I should not have to repeat myself.

xoxo

Saturday, 5 November 2016

MErmaid life.

I've always been fond of a nap and thought my normal heavy feeling was, well normal, so I was misdiagnosed with all sorts by different doctors in the last few years, including Sensory Processing Disorder (which turns out is just one of the symptoms).

Myalgic Encephalopathy is better known as M.E. or chronic fatigue syndrome.

It's like walking on knives all day and sometimes my brain is foggy like I'm underwater, though you can't tell on the outside. I just look tired.
I've had to admit the brain fog is too much, I had no idea what I was in for when the doctor told me about M.E. in early September.
People close to me would question my mental health when I'd spend days in bed only to get up feeling tired. I began to believe it though I was perfectly happy to just lie back down. Not spiralling in despair. My bosses were concerned and asked if I was stressed when I missed simple routine tasks expected of me.

I went to the doctors about the pains which were becoming frequent, shooting pains and aches in my joints and muscles. Numbness in my fingers and toes. I guessed I was vitamin or iron deficient. I wondered if I was in denial about stress and I was cramped up as a result.

Knowing what is actually the matter is a relief, I feel that treating the symptoms of M.E. are actually beneficial despite the increase and severity of symptoms.

My boyfriend, family and work have responded brilliantly to my news. I need to learn to accept the help I need and actually rest as much as I can. Going part time with work will give me a chance to get back to being me again.

Pacing my day is a great way of organising adult life, the aim is to only apply 50% of the energy I need to get through each day and forward planning my time, how far I might have to walk, what I might need to carry however small. I'm learning about regulating my sleep pattern, my GP is still helping me find the right medication and who am I to comment on chemical medicine? M.E. is so under-researched doctors still don't know exactly what to do! World wide, this neurological condition has yet to be linked with anything.

Researchers don't know what causes it and each patient has a variety of symptoms (aches and pains, chronic fatigue, weakness, sore throat, brain fog, sensory processing disorder, sensitivity to light...) and cases vary wildly from mild to severe and regarding length of time experiencing symptoms, some get better in a few months or years, others don't.

I am still baffled.
I know to stay away from alcohol, caffeine and naps. Naps, of all things.
Caffeine headaches, I mean, why did I start drinking coffee? I used to drink about 5 cups a day but I've scaled back to 1 or 2 if I get cranky in the afternoon. Twinings caffeine free fruit teas!

I need to appreciate what good health and energy I do have while I learn how to get better.

Thank you to everyone who knows me and has had to deal with the mood swings and my awful crying.
(Have you seen that youtube of the little crying girl - "have you had a nap today?"
That's me. My answer is the same as hers.)
I need to be active when I can, so if you have a dog and are hitting Roath Park I need your help, tell me to put on some pants and come outside for some fresh air!

xoxo

Friday, 5 August 2016

Y2K BABE.

As I remember your body returned to the earth, it is soothing to remember you and I and everyone are a fact of nature.
We are here and then we are not. It's not sad or fleeting. Nothing we do is a cosmic failure. There is no need to be sad.

I need a focal point as I am ruined today thinking I have out lived you, like so many who love you.

I miss you, Tisha. X


Wednesday, 5 August 2015

Card games.

Today is bitter sweet.
I will always be proud to be your little Mazmullar sister.
It is selfish to want you here, I only wish you hadn't left so soon.

Also - nobody else knows how to play Chinese patience.

I miss you. X


Friday, 31 October 2014

Happy Halloween!

My first unsupervised pumpkin carving was satisfying 
and not as difficult as I'd thought.






Ready to leave on our porch.
xoxo

Sunday, 7 September 2014

Doc Martens.

Hurray!

With Autumn weather looming and a 2 mile walk to work and back every day, I began to look into some decent boots. I've lusted after a good pair of Dr. Martens for years, they're iconic and strong. I'd heard patent ones were water proof and once they're broken in they're durable and last for years.





I was warned about how much they hurt your feet when you break them in and the stories were true. I've got the nastiest blisters on the back of my heels. Apparently it'll be worth it and I think they're beautiful. 

Bitter-sweet!

xoxo

Friday, 29 August 2014

Glenside Honey.

After years of laughing at stories of bee mishaps, my colleague has become a keen bee-keeper earning himself the role of Official Call Out Guy if you ever have a bee problem in the South Wales area. 
He's been selling his personally harvested honey in the local area and I've finally got my hands on a pot! I've opted for the plain one but they have other infused flavours, such as apple blossom.
Honey was always a staple in my parents kitchen as I grew up and I always include it on my winter shopping trips to soothe sore throats, my favourite medicine is hot honey and lemon juice. 
I'd fully recommend this gorgeous stuff, I was surprised to learn that the first dab of it that I tried on a teaspoon was the entire life's work of one bee. 


You can email the Glenside Honey Team @ dsmorgan81@hotmail.com for enquiries or pop over to their Facebook (/Glensidehoneyfarm) and Twitter (@GlensideHoney) pages for news and updates.


xoxo

Wednesday, 6 August 2014

Conscience on my shoulder.


When I am proud of something, I can't help but imagine you smiling. Shine on!
I will carry your memory for as long as I can, rest in peace.
xoxo

Tuesday, 5 August 2014

Restrung guitar.

I never think I can accomplish much on my own but I was driven to restring my acoustic guitar as I could tell a string was about to give and I wasn't risking it snapping in my face or slashing my fingers. I found this Youtube video really helpful - link!

I visited Gamlin's Music Centre on Saint Mary's Street, a lovely cavern of instruments. I needed a tool to de-wedge the pins in the body of the guitar that fix the strings down. The guys who served me were relaxed, well informed and helped me get straight to the point. This key winder/pin tool cost £2.


I'd previously purchased some bronze strings from G&M Music store for £8. I recognised the Martin brand as I know a few musicians. The staff recommended these as a beginner. They're more flexible and easier to play on. 



I got into it quite easily, the pins were easier to pop out than I thought. 



To a skilled musician this may seem like a routine, uneventful moment but I was so pleased with myself!
I really, really need to trim the excess string off though. 

xoxo

Sunday, 3 August 2014

SustainBox #2

My new GrazeBox was a nice treat yesterday. I nearly caved and opted for it to come a week early but it's been more enjoyable as a treat to look forward to. 

Little Figgy Went To Market: apple, cranberry and diced figs dusted with rice flour.
Jaffa Cake: belgian dark chocolate, orange raisins and roasted hazelnuts.
Soy Roasted Seeds: pumpkin and sunflower seeds. 
Texan Corn Salsa: salsa almonds, corn chips, roasted corn and jumbo chilli corn.



Mam used to fry pumpkin seeds in soy sauce back when I was little so I was looking forward to those. I also used to have a dried corn mix at school, so they were alright but the seasoned almonds were the main event. I'm meeting my friend in town today so I'll take my other two for pit-stop snacks while we're pottering around the city centre. I love this subscription, I'd recommend it to everyone. If you'd like to try a box for free visit Graze

xoxo