Bank Holiday Weekend

Hope everyone had a good bank holiday weekend, with not to much pain and fatigue.

As a part time carer I worked a few hours Saturday and Sunday.
I had so much pain on Saturday, my painkillers weren't seeming to touch it. 😓 However I went to my friends and we played board games. 

Mysterium which I liked, kind of like Cluedo but with cards. I really enjoyed that one. 

The second game we played was Articulate, Played in twos, Take it in turns to pick a few cards, and the person has to describe to they're partner what the word is without saying it. 

During that game I felt my body and mind starting to shut down, I was getting very tired,  I kept having to ask my partner to repeat as my brain was starting to shut down. When it was my turn to describe, my brain just went blank.

We had food after and watched TV.  I could feel my body tiring and so said my goodbye's and thank you's and went home to bed. 

I managed 2pm till 7pm.  Really grateful to my friends for inviting me over as I don't get out much anymore.  I felt awful before going, but I hate cancelling on people, and in the end  I was really glad I went. 

Sunday consisted of working for 3 hours in the morning, And then laying on my bed, watching boxsets and having naps every couple of hours as my fatigue was really bad.

Monday, Pretty much the same as Sunday laid on my bed more or less all day resting. Chatted on the PlayStation to my friends who invited me over on Saturday. Downloaded a new game to play, which I play in sessions, then have a nap or rest break after each session.

My rest breaks are having everything off and me closing my eyes for 10 mins, meditating. My M.E clinic advised me to do this and now it's habit. I take rest breaks every 2 -3 hours.  

My naps on a good day are 30 mins.  On a bad day they can be up to 1.5 hours.

Today is Tuesday. In a lot of pain with my back, body feels really stiff.  Took my painkillers 2 hours ago, but they don't seem to be doing much. And either the live in carer is making so much noise or my ears are overly sensitive today.
I worked a sleep night last night (yes, that is a real thing) and will do 3 hours today.  The rest of my day involves resting and my family are coming over tonight. 

PAINSLAYER!

Painslayer is a balm for pain made by Motorbikers Cosmetic Company (The UK's leading holistic company specialising in Fibromyalgia)
I was sceptical when I first heard of Painslayer on a Facebook group, having tried balms in the past that did nothing, However I thought I would give it a try and to my amazement it worked! Even though I take painkillers throughout the day, everyday; There are points in the day where the painkillers are starting to wear off but it's still to early to take the next dose. Painslayer helps keep the pain at bay.
Today I have taken Codiene and Pregablin, but still I am getting shooting pains in my legs.  So I have smothered them in Painslayer. 👍

I also use Painslayer before getting in the shower/bath.  The heat from the shower/bath helps relieve pain in my back and legs.

M.C.C products are all natural, essential oils.  No parabens, GMOs, pesticides are used in they're products.

They also have products for insomnia, migraines, muscle relaxant, insect repellent, lip balm and more.  As well as tattoo balm, shampoo, conditioner, soaps, skin products, hair products etc.

You can find more information at https://motorbikers.cc/ M.C.C is also on Facebook and do a FB live everyday from 12pm GMT. https://www.facebook.com/motorbikerscosmeticcompany/

What is Fibromyalgia?

• Fibro - Fibrous Tissues
• Mye - Muscle
• Algia - Pain

Fibromyalgia is a long-term condition that causes widespread pain over the body and high pain response to pressure.

It is more common in women although men can get Fibro too. Up to 1 in 25 people can be affected.

The cause is unknown however risk factors include traumatic experience, arthritis, and autoimmune diseases.

Fibromyalgia is complex, Other symptoms include:

• Cognitive Dysfunction (Fibro-Fog)
• Fatigue (Different to M.E fatigue)
• Sleeping Difficulties
• Irritable Bowel Syndrome
• Gastroesophageal Reflux Disease
• Poor Sleep
• Extreme Sensitivity
• Tingling and Numbness
• and more

There is currently no cure for Fibromyalgia but treatments to manage symptoms include:  Medication, CBD Oil,  Cognitive Behavioural Therapy, Pain Management, Lifestyle changes including diet, Exercise, Support Groups and Counselling.

Scoliosis, Kyphosis, Lordosis - What are they?

Scheurmann's Disease is a developmental disorder of the spine.  It occurs in a child's teenage years and the progresses if left untreated. It encompasses Scoliosis (Sideways curve), Kyphosis (Shoulders) and Lordosis (Neck and Lower spine)

• Lordosis  - C1 - C8
• Kyphosis - T1 - T12
• Lordosis  - L1 - L5

Postural Kyphosis can be corrected with exercises and back braces.  However in serious cases of Scheurmann's surgery is required. This includes discs being removed, and a rod, wire, bars or screws put in place to correct the spine curvature.

In mild to moderate cases back braces may be used, yoga and pilates exercises and painkillers to manage pain. This won't correct the curvature like Postural Kyphosis.

In my case, My last scan report of my curvature is deemed to be mild. Although my bulging disc is now a herniated disc.  Doctors have told me my curvature is not bad enough for surgery.  But they don't have to live with the pain, spasms and stiffness I have to live with every day. 

I was 28 when my back was looked into by a physio, even though I knew I had it.  Nothing was done early on.  The physio told me if I didn't address the problem I would be in a wheelchair by the time I was 40.

Now I do very gentle yoga/stretches, have a deep tissue massage every month, and take lots of pain killers.

Sports Weekend

Had a great evening with my mate last night. Watched Fa Cup Final and Speedway Final, Then watch a horror film called Ritual.  I hate horror films, but this was actually very good.

Today British Touring Cars is on tele,  So 6 hours of motorsport.  😃 Currently enjoying it from my recliner chair, but shall watch it from my bed in a bit to rest my back.

M.E wise, I don't feel to bad. I have had a few days of doing activities so will no doubt the next couple of days I will be feeling very tired, but I don't have much to do this coming week.

Pain wise, not much different.  My lower back is so stiff and painful. I'm still getting spasms in my back which are very painful. My legs still hurt but the pain is a little bit better than the last few days.
Back pain on the scale 8/9, legs 4/5 only really feel pain in my legs when I am standing, Back pain is constant. 😫

Anyway, tomorrow is a another day and hopefully a less painful day.

PAIN!!

Soooo much pain!!!  My back and legs are killing me. Pain scale 8/9.   Codeine and Pregabalin have numbed the feeling to a point.  Still in a lot of pain in my back.  My joints are popping, my back is still spasming.

Choir yesterday was fantastic. We had a segment on BBC Look East, both the evening and Late night news. 35 members of Invidia Voices will be performing on stage with Take That on the 30th May at Carrow Road in Norwich.  I didn't both auditioning as I don't have much mobility.  Would have been pointless.

Today I have a friend coming round, which is great, I don't get many visitors at home. Being out in the sticks. And it's hard for me to get out.
We will do my Bouzouki lesson, then watch some sports. Have a couple of beers.

Tomorrow British Touring Cars is on tele, so I can have a rest day and watch racing :)

Got to keep myself dosed up on pain meds otherwise I'm not sure I can get through the day.

Got to keep thinking positively.

Painful Friday

I've been resting the last couple of days, hence no posts.  

My pain levels have been really bad yesterday and today.  My knees have been an 8 on the pain scale.  Unable to bend my knees without terrible sharp pain. So last few days have been spent in my chair.  Only making pained journey's to the bathroom and kitchen area of my bedsit.

Today I've spent all morning and afternoon in bed, so that I could manage a shower and go and sing with the choir I am in.  (once a week - term time) Invidia Voices Choir will be appearing on BBC Look East tonight at 6.30pm.  Always the musician, long after I had to give up playing guitar and bass thanks to these debilitating illnesses.  At least I will have accomplished something today.

My tremors are also a lot worse than normal today.  I'm very wobbly on my feet, spilling drinks, dropping things. 

I best start getting ready got to leave shortly :o

Crash day

Today is Tuesday 14 May. Just a short entry.

I had to cancel my attendance for May's monthly M.E support group.  I'm so tired, I can barely keep my eyes open, I've had 2 power naps already today - They didn't make me feel any better, but I was falling asleep anyway.
I have sharp, shooting pain in my legs, arms and back.  My back and neck are incredibly stiff.  And I've had a couple of very painful spasms.  This is all after medication :/
I knew this was coming after the protest on Saturday, I hope that I did enough by sitting in the wheelchair to reduce the damage of a crash.

Yesterday was a rest day, although I did manage a couple of hours chat and gaming with a friend via PlayStation.  Went to bed at 7.30pm, exhausted. took 3 Nortriptyline's, and was out for the count. 

I really feel that very light yoga would be beneficial at the moment to ease the stiffness and pain, but I fear I will crash after and be back to square one.

Anyway, back to bed I go.  Hopefully I have the energy to watch a bit of TV without falling asleep again.

Norwich Millions Missing 2019

Yesterday's M.E awareness protest was great.  I arrived about 1.30 pm. I took my wheelchair as I knew there would be lot's of sitting and I couldn't carry a chair, blanket, coat, brolly, bag down to the protest area.

Me being rather shy and anxious in public situations, especially when I knew no-one, I sat around for awhile on my own. Then people started coming up to me - protestors and public.  Then I started to get involved.  Educating people who had never heard of this illness, Talking with people who had family with M.E, and discussing how Millions Missing is campaigning for Biomedical research. I had a placard and handed out information leaflets.

The shoes are iconic.  They represent the people that are to ill to get to the protest.  People who are bed/house bound because of M.E.
The labels also list the time ill, the activities those people miss doing from they're lives before M.E
The shoes were drawing the public over, it was great to talk to people who either knew of this illness and wanted to know more, or people who had never heard of it.

There were several of us with placards, We got a lot of people's attention, A lot of people reading and coming over to talk.

I missed the morning events as I was working, but the scientist's presentation about Biomedical Science is up on Norwich Millions Missing Facebook page https://www.facebook.com/MMNorwich/ .  I only took these pictures, but more can be found on the above link too.

In the afternoon testimonials were read out from people who couldn't make it, and also by people at the protest.  I noticed a lot of the public stopping to listen which is great.

I met a lot new people who are part of M.E Support Norfolk, Hopefully we can meet again at the monthly meetings.

I was there for about 3 hours, towards the end I started to shutdown, zone out when people were talking, started to get chilly, and in pain. When I got home, watched some TV then fell asleep on the sofa.

Today is Sunday 12 May.  It is M.E & Fibromyalgia day. I am really hurting from yesterday's events, painkillers aren't touching it, my body is stiff and I'm very tired, but I know the M.E will hit hard from tomorrow. It always does,  I think I've got away with it, and then bang, I'm in bed and I have no energy to get out. I'm sure many of who attended yesterday will be feeling the same in the next couple of days.  It is the price we pay for trying to live a normal life that healthy people take for granted everyday.

Anyhow, it was worth it, I really enjoyed myself yesterday and I am looking forward to Millions Missing 2020.

Jasmin
#MillionsMissing

Millions Missing

https://www.meaction.net

Today is the day!! Millions Missing demo in Norwich, on Hay Hill outside Next.  11am till 5 pm. 

Millions Missing is a worldwide campaign to raise awareness for Myalgic Encephalomyelitis, call for action from the governments all over the world, and to raise funds for Biomedical research. 

I'm hoping to take a few pictures of the event and will be posting about it tomorrow.  Tomorrow is also Fibromyalgia awareness day. :)

I have been really sick for last months, Last couple of M.E clinic visits I've had bad exhaustion, 4 weeks ago came down with a virus, that's cleared up now just left with the sniffles and more fatigue, But i'm not missing this, It is a really important day for M.E awareness.

Jasmin

#MillionsMissing

What is Myalgic Encephalomyelitis? (M.E)

• Mye - Muscle
• Algic - Pain
• Encephalo - Brain
• Myel - Spinal Cord
• Itis - Inflammation

M.E is a medical condition, the main symptom of this is long term Fatigue.  People with M.E can also suffer with pain, inflammation, brain fog, unrefreshed sleep, headaches and more.

There is currently no cure for M.E, nor is the much in the way of research.  Awareness campaigns are currently ongoing with M.E day being 11 May.  A charity called 'Millions Missing'  is currently campaigning for Bio Medical research.

M.E is a condition that makes simple daily tasks almost impossible to complete and often need help from a carer, such as cooking, cleaning, showering etc.  Following these tasks, a sufferer can be bed or chair bound for hours afterwards.  Outdoor activities may put a sufferer in bed for weeks after.

Introduction

Hi, My name is Jasmin.  I am 31.  I was diagnosed with Myalgic Encephalomyelitis in 2016 at the age of 29, however I had been suffering since 2014.  I had no idea then how my life would change for the worse. 

I also have Fibromyalgia, Kyphosis/Lordosis, Insomnia and Essential Tremor.

I currently work part time as a carer for my step dad, I feel very fortunate to have this job as it is flexible, working with family is much more forgiving.
I used to work at Aviva on top of this job, I got made redundant in 2014.  However I wouldn't have lasted much longer, as I was on my final warning for sick days)

I decided to make this blog to use as a diary. Posting about my day to day life, experiences, and awareness.  And  also to show others with this debilitating illness that they are not alone.  

More to come.
Thanks