ME and Fibro....

Updated: Jun 12, 2021

As with many conditions out there these two (ME and Fibro) are not getting enough research and there is not enough information out there to make people aware of what it is all about.

It can take way too long to get a diagnosis and often by the time you are you can be very sick indeed. It took me many years to be diagnosed with ME and then Fibromyalgia only four years ago.

When I did get diagnosed I felt a sense of relief, that was until as I looked into it I realised how much of a bad stigma was attached to it, so this impacted my symptoms with the stress of it all, then BOOM I then lost my hard earned career too and boy oh boy along came a very tough time. So when I hear people saying it is not real or they are making it up it makes me want to scream!!! I LOST MY CAREER, INDEPENDANCE, MONEY and in a lot of ways I then grieved for the life I once had..... WE ARE NOT MAKING THIS UP AND IT IS VERY REAL.


So as it is ME and Fibro awareness Day I wanted to get some information out on my blog for people to read, hopefully understand the condtion more, pass it on and not to judge those who have these conditions.


Common problems encountered most days:

Disabled bays - you get horrid looks and verbal abuse.

The way you look versus the way you feel.

You do a task - then that task destroys you but people do not generally see that later part!

That one day you went out and met up with a friend, they do not see that it can take up to a week or more to recover.

You have to say no to a lot - then people stop asking you.

You can't function - your just lazy.

Hiding the pain for others - then they think your making it up.

You walk along for a short time - so you must be fine I saw you.

Being fatigued - NOT the same as another person's TIRED.

Your SO moody - if they were in this much pain and this fatigued they would be worse than you since you have become a master of putting a face on it.

CRASH - Flare comes along and effects every moment of every day until it eases up.

Your weakness - you just need to get fit.

Everyone talks funny when they are really tired - NO WORDS.

Weight gain - you live on adrenaline ( sugar hungry cell, so you feel awful and crave sugar) and all the medications - You just need to excercise.


Here are some links with a lot of information for you to browse through:

https://www.nhs.uk/conditions/chronic-fatigue-syndrome-cfs/

https://www.actionforme.org.uk/get-information/what-is-me/what-does-me-feel-like/

https://meassociation.org.uk/

https://www.cdc.gov/me-cfs/symptoms-diagnosis/index.html

https://www.nhs.uk/conditions/fibromyalgia/

https://www.healthline.com/health/fibromyalgia

https://www.cdc.gov/arthritis/basics/fibromyalgia.htm

https://www.fmauk.org/

https://ukfibromyalgia.com/

https://invisiblyme.com/

https://fmaware.net/

https://ukfibromyalgia.com/

https://www.mesupport.co.uk/awareness-day




This post will keep being added too ......


Some great news: Me Research UK are funding some research in Australia into the brain stem dysfunction in people with ME. Fingers crossed this will help us undertand the condition better and just maybe get some kind of treatment in place.

https://www.meresearch.org.uk/research/investigating-brain-stem-dysfunction/


The below link has lots of good information about Fibromyalgia:

https://fmaware.net/fibromyalgia-research-overview/


Also bear in mind that a lot of these will also have Facebook groups and things if you want to join groups that way. Great oppurtunity to talk with others in a similar situation. I say similar because as we know these illnesses effect everybody differently.

https://www.facebook.com/MESupportUK


A link to the history of ME:

https://www.mesupport.co.uk/m-e-information/a-short-history-of-m-e


An article written by a young lady who got diagnosed with ME and then POTS.

https://disabilityunit.blog.gov.uk/2021/05/12/me-awareness-day-living-with-me/


When I woke up this morning I was feeling pretty positive and had great ideas of what I was going to achieve today. It is now 12.42 and just got back from the second of three school runs today and my levels just dropped, so I ate, then I ate chocolate, then I ate some fig rolls.... to someone else that would seem excessive but my body was struggling, shaking and feeling awful so I kept stuffing sugary crap into my body. That sugar has now kicked in but suddenly I feel lethargy creeping in and pain rising. My four year old is keeping me busy and in a couple of hours the last school run needs doing..... the thought of that right now fills me with dread. My jaw has become slack, I feel like I lose some control over it, like I am too tired to put tension back in it and often this leads me to over salivate and sometimes (TMI I know) slobber!! I know, bad right??

So like most days this one will not quite turn out how I had planned...


Gentle hugs,

Tracey x



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