Here is my story…

please share my journey far end wide ❤️🎗

❄️ myasthenia gravis awareness ❄️

So last month my mum and auntie were trying to get donations for this charity Myaware that is very close to mine and my families hearts. Both my mum and my auntie were both walking to raise money for this charity. I’m going to talk about my journey with myasthenia gravis and all the challenges I face daily to raise as much awareness as possible. I have lost people on this journey and I’ve also gained some amazing people.. here goes..

Back in 2019 June 13th I gave birth to my beautiful daughter. Ayla angela paterson 💕 her birth was horrendous which led me straight to theatre to be put to sleep in order to repair the damage she caused. She was 10lb 2oz and I (size 6, 8.5 stone at the time) gave birth naturally 😳😣 me and ayla both stayed in high dependency for a few days while I was attached to a drip and catheter. We got home and all seemed so perfect, my beautiful baby was here, she was healthy, we had a lovely house and we were a little family. Little did I know that this perfect little life was about to turn upside down.

Becoming a new mum is never easy but I struggled terribly with the sleepless nights. The work load that comes with it and I started to think I was a horrible mum.. why was I struggling so badly? Why did I feel so ashamed to say I was struggling? So I just pushed on trying to “get a grip”… this is where I done more damage!

It started with my eye lids dropping, I just automatically thought maybe I had a sty or something coming on. Then the double vision happened. I was seeing 2 of everything it was horrible. So I thought it was best to call the opticians and maybe get some drops or new glasses. The optician noticed I was very nasal when speaking which I was but I put it all down to sinuses. The optician referred me straight to the hospital. This was when things got scary. Multiple CT and MRI scans, blood tests, and loads of hospital visits to speak to neurologists. I was terrified as they were testing me for all sorts.. MS, MND, Bell’s palsy, you name it! Then after many hospital trips, tests etc my neurologist mentioned myasthenia gravis. What the hell was that?? I obviously automatically researched it and seen the words “life long” and “life threatening” and was absolutely terrified.

My baby was only 3/4 weeks old, I was suffering horrible postnatal depression but I was trying to keep myself occupied and happy for her sake, my mental health was deteriorating rapidly and it was ruining my relationship. I felt absolutely hellish all I ever wanted was to be told “everything will be ok” but these words never greeted me. I was majorly stressed, I wasn’t sleeping, not eating right and each day felt like a challenge. Each day I got weaker and weaker, to the point my eye wouldn’t open, I could barely lift up my own head, I couldn’t walk right, I was loosing my speech and my family obviously rushed me to hospital! This is when I was admitted into hospital for 2 weeks.

Being admitted to hospital was horrendous. I was trying to breast feed ayla at the time. She was attached to my hip because she was a newborn and the only comfort I had. Admitting me into hospital where ayla wasn’t allowed in damaged me terribly. PND badly kicked in, kicked in to the point they had a priest at my hospital bed trying to help me. YES A PREIST! I was so badly damaged I missed my daughter terribly I felt lost, numb and the biggest failure of a mum ever. Things were only getting worse I was now getting oxygen, I was taking panic attacks, wasn’t eating or sleeping much in the hospital at all that nurses had a constant eye on me. I broke down badly to one of the nurses. I didn’t even want to wake up I felt so depressed and scared with no official diagnosis yet but I knew my baby needed me. Finally after seeing how mentally damaged I was and how rapidly it was happening they allowed me to have my daughter staying over, their only concern was how the hell would I look after her being so ill but as a mother my mother instinct kicked in and once she was in my arms and I knew she was going no where I felt better. I mean I still had all the horrendous symptoms but my mental health instantly felt better I felt “at home” it didn’t matter where I was as long as I had my baby by my side!

The days were long. I wasn’t allowed away from hospital grounds and I needed a constant help. My mum (even though she had a newborn herself) did everything she could. My dad was amazing he stayed with me most days from morning until evening. My gran had to come in the middle of the night to stay with me as when ayla fell asleep I broke down, I was out in the corridors crying begging for them to let me have my gran in with me over night. I was so scared I’ve never felt so scared. I had a newborn lying there. I was so alone. Luckily they were absolutely amazing and my amazing granny was by my side that night.

Since I was younger I always dreamed of being a mum I’ve always been so maternal. I always dreamed of being one of those “perfect” mums with that “perfect” baby. My baby was perfect and still is in every way but I felt so far from it. It wasn’t suppose to be this way 😞

Days past and I had a neurologist who had to get the train in to speak with me. She was a specialist in MG. I remember her coming in with a box of tissues and a big booklet… my heart sank I was so worried why was there tissues??? She gave me my diagnosis of MG and explained it to me in every detail. She gave me support networks and a charity to join (Myaware) which specialises In finding treatment, help and support, and a cure for this disease. The following hours… days and weeks were a blur. I was struggling one hell of a lot and I didn’t really have anyone to turn to. No one has heard of this illness and I “look fine” but everyday was and still is a terrible struggle. Some days I can’t lift my own head or walk at all, my muscles are terribly weak and there is a chance one day I may never be able to walk again and end up in a wheelchair if things get worse and worse.

That perfect family life soon crashed, I had completely lost myself, I needed a therapist or help but I didn’t ever get any. My relationship was over, my life was a mess, I was scared, upset, and so lost loosing the person I only wanted the most. I left my 1st family home which was so hard on me as it’s where I took my newborn home to and enjoyed her first memories, the memories before I knew I was ill. I went to my mums and stayed there for A few months.

I eventually got my own house and an absolutely beautiful one at that. I thought this is exactly what I needed to get back “on the rails” however the complete opposite happened and I had broken down the hardest, worst and most scary time yet. I didn’t want to live what was the point when I wake up everyday so lost. I was in hospital again. My mental health just wasn’t ok. My family decided to help me with a private therapist. This was a big help to me she helped me with many things especially the feeling of abandonment and accepting my chronic illness. Don’t get me wrong I’ll never be the same again so many things have shaped me into who I am today, some positive and some negative. I haven’t accepted my health yet I still have horrible breakdowns and nightmares. I think it will take a long time to accept this is my life now. One of the hardest things ever is loosing those who you needed the most when you become chronically ill. I admit I was a stressed, crazy emotional mess but all I ever needed was help.

I had surgery called a thymectomy in the august of 2020. They planned to do this keyhole but couldn’t so they had to do it almost open heart to be able to get behind my heart, remove the tissue around my heart and then get access to the thymus gland to remove it. This operation was not guaranteed to work but there was a chance it would help my symptoms. I was all alone in Edinburgh due to covid getting this massive surgery I wasn’t sure I’d even wake up from. I woke up in ICU attached to cables all over. I had a drain in my lungs which was probably the worst part. I had drips, a catheter, a morphene plug which I needed to press all the time to help the pain, I was on oxygen and trying to bare the agony from the surgery. We know the operation now didn’t work for me, in fact I think I’m worse but it “isn’t possible”. Stress is a massive factor to me not getting well either. After my relationship ended I was diagnosed with more problems.. chronic hives, the most horrible looking thing ever but it was all down to stress again. I still to this day get them but not as bad as I take a very strong antihistamine every morning. For example my back was covered in hives on the run up and on my daughters birthday as I held a party for her and as I’m such a perfectionist when it comes to her as I feel I’ve let her down so much with my health so I always try over compensate and I ended up with stress hives. Today I don’t have any and it’s all over with so it just shows you how much stress does affect the body!

Fast forward to now.. wow it’s been one hell of a journey and I’m no where near the end but I’ve passed all those bumpy roads and my life seems to be going ok. I mean my illness is not good I have flair ups more than ever but I am really struggling being a single parent while trying to do everything else I do. I am so grateful for those who I’ve lost and especially those who I’ve gained. I’ve met the most amazing special guy who’s walked into my chaos and took it all under his wing. He’s learned all about my illness which is one of the most important things to me as it’s so rare. He helps me in every way. There are days I can’t lift up things so he lifts my daughter to bed for me and tucks her in. This is something that really hurts me in ways as I want it to be me but it’s something that I find so special.. he doesn’t need to be here with me and ayla and doing all this but he does, because he wants to.

I have put on 2/2.5 stone rapidly due to all the steroids I’m on, I cry about my weight and my appetite pretty much everyday but not a day goes by where he doesn’t tell me I’m beautiful. He’s one in a million. I didn’t think I’d ever get to this place with someone else but I’m here and I absolutely love it.

The steroids are absolutely torturing me everyday. I suffer weight gain, short term memory loss, insomnia, depression and anxiety, paranoia and rarely hallucinations. I need OFF THIS DRUG but it’s going to take a long time to taper down if my body even lets me as I’m on 90mg of it which is huge and the highest I’m allowed.

I am having a flair up just now nothing seems to be working for me but I have a follow up with my neurologist soon so hopefully i can maybe get some intravenous immunoglobulin (IVIg) treatment planned, this is just a blood transfusion. So fingers crossed for some good news tomorrow and a small step in the direction to getting my illness stable!

Thankyou for taking the time to read this this is as short as I could get it lol as there’s so much more to my life these last couple years but I just wanted to highlight the important parts. I get asked ALL THE TIME what my illness is so I hope this has raised some awareness for all of us fighting it. A massive shout out to those of you fighting chronic and invisible illnesses/disabilities. We have got this. Sending so much love to everyone ❤️

I am 15/100,000 in the uk🎗

Thankyou for taking the time to read my journey and Thankyou to those who donated. U are all fabulous! ❤️

All my love & best wishes. Demi

Any donations made from sale of Scentsy products will be donated through Work for Good.

However, if you’d like to make a general donation to the work of myaware, you can do so on this page. Thanks everyone for your support!

Demi Ford