Charity work is so important to me.

/ Myalgic Encephalomyelitis / By

Why this is so important to me .
The first time I really got involved with raising money for charity I was 10 or 11 maybe . We were doing a sponsored swim to raise money for Alder hey hospital , we were raising the money in the name of my baby cousin . This poor baby had been through so much and the Dr & Nurses at the hospital had been amazing so as a family we wanted to give back.

You see for me charity work , raising money and raising awareness is always personal . Again as a family all our girls got together to take part in the Race for Life . I ran with my baby girl in my father in laws name , that was an amazing day . It had to be the hottest day of the year and here’s us in tutus and bunny ears . That walk is inspirational and if you ever get the privilege to go down and support the ladies that take part then do it . You have survivors , people who are fighting the disease , people who have lost someone . The atmosphere at these things is something you will never get anywhere else . It really is inspiring , don’t get me wrong it is a sombre day for so many and I hope you never have to experience the loss or the fight of your life . It’s something I will remember for the rest of my life .

Unfortunately for me I ended up in hospital the next day , the nightmare for me was truly beginning.

Since then my life has been turned upside down . I now spend my life confined to my bed . I can’t cook for myself , my daughter helps me wash . My hubby and daughter do all of the housework between them , the washing , ironing .

If I didn’t have my phone I would have gone mad a long time ago . For me my phone is my lifeline . I keep in touch when I can via social media . I have FaceTime so I can still see people in a way . When we lost my Uncle Michael I don’t know what I would have done without it .

Uncle Michael is my dads brother . Michael moved to Australia a long time ago with his wife and 2 children . They emigrated for a better life and Michael really loved his new life . He built his house , made some amazing friends and achieved so much . He was a father and grand father when he started showing signs of Alzheimer’s . They flew home in 2007 the illness was beginning to take hold of him but in so many ways he was still the same uncle Michael . We had so much time together as a family when he was here , he got to see my niece being christened . Met my baby girl for the first time . I never thought it would be the last time I would see him .

Over the years I stayed in touch with his daughter , my cousin and she always told me how he was . She told me so many things that if it was happening to me , then I wouldn’t have held it together the way she did . My Aunty lost her best friend , her soul mate and yet she stayed strong . So so strong.

As a family we never got to say goodbye , his sisters managed to get over to be there but as a whole , Brothers , sisters , nieces , nephews , great nieces , nephews , well we never got to say goodbye .

So when I read about the Alzheimer’s Walk at Aintree racecourse I had to , my head went into overdrive . This was a family that due to work commitments , starting lives in new locations , well like others , we hadn’t had all of his brothers and sisters together for a long time . It was going to be tough but I had to try . It got bigger and bigger , I arranged a family fun day at my dads local . We had disco , karaoke , buffet , face painter and of course as a family we were doing this walk together .

Michael in his youth had kept birds , so my Aunty D arranged for us to release Doves at the start of the race . We worked closely with the fundraising team , we had interest from newpapapers, TV . To start the walk they had arranged for Craig Phillips from big brother to start the race alongside with the Lord Mayor , Gary Millar . My family name is Millar so well when I say the snowballed , you could have build 200 snowmen from this .

We were asked to meet the Pr team at the start of the race . We arrived as a family all 28 in the end I think . Craig Phillips is amazing , so down to earth , his Mother also suffers so this day meant a great deal to his family too.

So start line , we are greated with a wall of cameras . As our family are scousers born and bread we had the local press . We had the local news team . We ended up starting the race alongside our Lord Mayor , Gary Millar and Craig from Big brother . Our little ones helped release the doves it really was a fitting tribute to my Uncle Michael and it shows just how amazing my family really is .

We headed to the pub and we had a great afternoon , we raised so much money on the day and along with our sponsorship money , let’s just say we raised an amazing total . At the start of the race I took the opportunity to call my Aunty in Australia and she was amazed .

http://www.itv.com/news/granada/story/2013-09-08/memory-walk-at-aintree/
http://www.liverpoolecho.co.uk/news/liverpool-news/aintree-racecourse-memory-walk-remembers-5853533
http://m.baytvliverpool.com/vod/?vid=ABV522db7907a579
Call me selfish but I have to feel passionate about something to put in an effort because I know how much it is physically and mentally going to affect me when I crash . Doing that took so much out of me .

So if I am raising money and awareness it really truly affects me in every way . Now all I can do to raise money for a charity that has helped me personally , is dress as a princess . I wish I could run a marathon or climb a mountain , but I can’t even climb my own stairs . ME awareness week should be promoted , my fellow sufferers and I deserve help to find a cure , to raise awareness , to help people understand . We should not have to exist confinded to our beds .

That’s who I am involved and proud to be a Princess for ME Awareness , please support me .

This illness deserves the same exposure as every other illness . So please share this blog , let’s give ME the exposure it deserves .

Thankyou x

If you are suffering with ME and need help and advice the ME association are amazing , they have done so much for me x

http://www.meassociation.org.uk/
You can find me on Twitter @Whittsmills or Facebook https://www.facebook.com/pages/ME-ME-ME-My-life-with-ME/1593579467531675

Above all if you can help by sharing my blog to raise awareness or help by donating to

2018 Just Giving pages coming soon x 

 

From the bottom of my heart I thank you x

Related Posts

What is Myalgic Encephalomyelitis

According to the NHS Website, Chronic fatigue syndrome (CFS) is a long-term illness with a wide range of symptoms. The most common symptom is extreme tiredness

For more information please visit https://www.nhs.uk/conditions/chronic-fatigue-syndrome-cfs/

People with ME/CFS have fatigue that is very different from just being tired. The fatigue of ME/CFS:

  • Can be severe.
  • Is not a result of unusually difficult activity.
  • Is not relieved by sleep or rest.
  • Was not a problem before becoming ill (not life-long)

Worsening of ME/CFS symptoms after physical or mental activity that would not have caused a problem before illness. This is known as post-exertional malaise (PEM).

Sleep problems.

Many but not all people with ME/CFS have other symptoms.

Pain is very common in people with ME/CFS. The type of pain, where it occurs, and how bad it is varies a lot. The pain people with ME/CFS feel is not caused by an injury. The most common types of pain in ME/CFS are:

  • Muscle pain and aches
  • Joint pain without swelling or redness
  • Headaches, either new or worsening

Some people with ME/CFS may also have:

  • Tender lymph nodes in the neck or armpits
  • A sore throat that happens often
  • Digestive issues, like irritable bowel syndrome
  • Chills and night sweats
  • Allergies and sensitivities to foods, odors, chemicals, light, or noise
  • Muscle weakness
  • Shortness of breath
  • Irregular heartbeat
Information is taken from The CDC Website https://www.cdc.gov/me-cfs/symptoms-diagnosis/symptoms

Myalgic Encephalomyelitis does not have a cure.

Find a Dr or Consultant who listens to you is the first step

It is a manageable condition and depending on the severity of your symptoms the more difficult this can become.

I advise learning to listen to your body and what it is telling you. If you feel tired rest and if you feel pain find a solution to reduce that pain, this could be through pain medication prescribed by your Dr.

I am not saying that finding a Dr who listens or listening to your body is going to be easy as this illness is incredibly complex for some and manageable for others.

Having a Dr who listens to you or reads about the latest drug that sufferers are recommending can take a lot of unnecessary stress and anxiety from the sufferer.

It would be best for me to point you to the above question What is Myalgic Encephalomyelitis? 

Most pages list the illness as ME/CFS or Myalgic Encephalomyelitis/Chronic Fatigue Syndrome or sometimes even Systemic exertion intolerance disease (SEID).

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