Thursday 3 December 2020

Just get it out

An update, my war and peace so far.

For the last 6 months I've been keeping myself busy with all kinds of things. Many people say that arts and crafts are therapy and this is so true. Talking to family and friends is also of the most importance to keeping your sanity intact. So many are struggling with their physical and mental health due to the Covid Pandemic. I think everyone knows someone who has either lost their life or has been effected by this virus. On the horizon is a vaccine that hopefully will kick start the normality of life.



After 4 months of phone calls to the doctors surgery I was added to waiting lists at the hospital and as we had come out of the first lockdown I was hopeful that I would speak to someone with more knowledge of Bells Palsy. At 4 and a half months I started video calls with a fantastic physiotherapist who was the first person who had experience of Bells and has been a fantastic support. At this point I still had no movement or recovery. She gave me a series of stretches to do with massage to re-align my face which pulled to the left side. Eye exercises to encourage my eye to close.

In between all that was going on with me, we had to make the very difficult decision to say goodbye to our fur baby and send him over rainbow bridge. He has left an enormous hole in our life.



 A week later things started to change for me. I was achieving more movement in my eye and my right cheek started to lift. Along with the cheek lifting my right eye started to close when I puckered my lips. This was the beginning of Synkenesis which was what I hadn't wanted to happen. The next physio appointment we focussed on trying to minimalize the amount of movement in my cheek causing my eye to close. 

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At 5 months I was still having difficulty with facial functions so made another phone call to the doctors and finally they agreed to send an urgent letter to our hospitals ENT department rather than a letter of advice which is what the previous letters were. 

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Yesterday, I spoke to a Consultant at the hospital who asked me to explain the time line of my Bells Palsy. I tried my best to keep it brief and only to the important events. He was really clear and questioned things that I told him. He is requesting an MRI scan and hearing test as the information I gave him doesn't sit with Bells Palsy and more to me having Ramsay Hunt Syndrome. This is the point I sit crying as I asked at the second week of this journey for a blood test to see if I had Ramsay Hunt and was told it wasn't necessary. I'm hopeful that the appointments come through quickly and can get some answers as to what has gone on. 

The recovery from RH is not as successful as with Bells, think I knew at 3 months my recovery wasn't going to be the best. I'm not an expert but have done so much reading and have the understanding, the longer it takes the less back to full facial functioning I'll get. I still have no taste, no automatic eye closing, headaches, no forehead/eyebrow movement, ear pain, tinnitus, lifted top lip, no sensation in my bottom lip, can't seal my lips make eating and drinking challenging. 

Over the next few weeks I hope I have a clearer picture of what is going on. I have been ensured by my physio and the consultant that there is still hope for improvement so it's not all doom and gloom.

Staying positive

Debbie xx

Sunday 6 September 2020

Update and New Start

 For a long time I've dreamed about using what I'm passionate about my job. With such an unprecedented year and the way my health has been affected, it has had such an enormous impact on me. I am still pushing to been seen by health professionals to guide me through Bells Palsy. I have finally got through the first maze and hopefully will have appointments for an MRI, hearing check and physio to help build the muscles on the right side of my face.

So sitting at home for me is impossible and I certainly had no thoughts about retiring. I love to make. Whether that is sewing, stamping and colouring, painting, knitting or any other craft that inspires me. My family are so supportive and often on the receiving end of 'in a minute, I'm just finishing this.'

For the couple of weeks I've been making and would love to have a look and know your thoughts.

It's a 'Fresh Start' for me.

Debbie xx

Monday 31 August 2020

A bend in the road

 Today is the last contracted day as a teaching assistant. The job I have loved for 25 years. It will feel really strange this week as my friends and colleagues go back to work. When I had my own children and they started at nursery I found that the learning they were gaining was so valuable. Learning through play, interaction with other children and adults was so valuable. This is where my passion for working with children started. I have worked with so many talented educators in schools and through art workshops and I still love the way that they share the teaching and knowledge.

Over the last 12 weeks I have learned that stress can have such a massive affect on your body. I have always considered myself to be strong and have coped in many challenging situations. My husband has been my rock, he has said the right thing at the right time, listened when I've needed to sound off my frustration and kept our sense of humour which is so important to us.

Facial Palsy isn't life limiting but is life changing and during these unprecedented times there are so many who have more urgent needs than me. I hope that the new normal will become easier for everyone.

I truly appreciate every message I've received, they have certainly kept me positive. I am so lucky to have so many fantastic friends. I had to shelve my crafting and sewing for a couple of weeks as I couldn't focus well enough. Crafting and making is such a therapy for me and I needed to get back to it. A couple of friends have faith in me and have helped nudge me back into my craftroom which I can never thank them enough for.

So this week will be a fresh start for me as retiring doesn't appeal to me yet.

Thanks for popping in

Debbie xx


 

Sunday 14 June 2020

1 week on

 Last week I didn't realise how the effect of this condition would impact on my everyday life. I am still being positive that I will make a full recovery but if anything it won't be as quick as I hoped.

My phrase of the week was, 'This shouldn't have happen to me'

Sunday, a week ago putting eye drops in to lubricate my right eye was a form of torture, stinging and burning. So after a phone call to 111 they needed to stop until speaking to GP.

Monday, antibiotic eye drops and oral medication for thrush arrived with lots of relief. Steroids are wonderful things but do carry side effects. First of my beautiful flowers arrived and they were much appreciated.



Tuesday, the reality of eating with only a tiny amount of my taste buds working and only half my mouth doing what my brain tells it how to work. You can't survive on soup and rice pudding. Everything has been cut into tiny little pieces for fear of choking. More beautiful flowers and cards arrived which means so much.



Wednesday, the fly. We had a fly in the house and it seemed to follow me wherever I went. I know this because my super power at the moment is sound. If I could of caught it, it would have been a squashy end for it.

Thursday, a phone call to the GP again, who have been really helpful with as much advice they can give at a distance. The thought of being at work not being able to eat properly, no energy, sound or any louder noises, ear piercing, not being able to close my eye and dust, painful was just to much. On top of that how delicate my mental health is at the moment a sick note was advised. A couple of friends pointed me in the direction of a lady who is on the other side of the planet and her episode of facial palsy started within days of mine. Reading her social media posts she has been through it but is staying positive and said to get in touch if I wanted.

Friday, hubby finished work early which was lovely not to be on my own for so long.

Saturday, was a b****r of a day. Early wake up as usual and I hadn't slept well. Hubby was off to work at 6.45. My tummy just didn't feel right and I was having really hot flushes soon followed by stopping in the hallway and my legs giving way. The cool of the wooden floor felt good but not being able to get up not so good. Hubby found me and helped me to the settee. We decided he wouldn't go to work, thank goodness he didn't because there was another fainting session about an hour later. The rest of the day was spent on the settee. I'm pretty convinced the events of the morning were due to the finishing of the medication, I really don't want to experience that again.

Sunday, so far has been pretty steady and I'm hoping it will continue like this.

Tomorrow, will be a new start to exercises, carefully and positive thinking
Debbie xx


Sunday 7 June 2020

5 days of changes I can't control (bit of a war & peace read)

I'm hoping by writing this will help others and me.

On Wednesday evening last week I started with ear ache in my right ear that travelled down my jaw line. I didn't worry to much thinking, I could get some antibiotics the next day if it didn't ease during the night.

Took paracetamol the next morning and it eased. I had a funny twitching on my bottom and top lip but ignored as it wasn't causing a problem.
 By the evening of the Thursday I took my first photo as my lips were feeling like I'd had a numbing injection at the Dentist, (the ones we hate because something horrid is going to happen). Before getting in to bed my right eye lid was twitching and this was when Dr Google came onto my phone.
The first thing I checked was I could move my tongue to the left and right side πŸ‘… I could raise both arms πŸ™Œ and move both legs 🚢 So off to the land of nod I went.

Friday I wasn't at work, hubby had gone to work so usual routine of the last 12 weeks followed. Kettle on, feed the dog, pc on to check emails and peruse social media. Something was not quite right when I put cup to my mouth, the numb feeling was worse and the coffee wasn't going in properly. When I sat at my pc I took and other photo and noticed my right eyelid was down. A video was next and my eye was not blinking. With everything I suspected was happening now confirmed in my head I think I was first in the phone cue at the Drs.

One of our lovely Drs called back within the hour and suggested a video call, new to me but quite straight forward). She needed to see what I was trying to explain through a slur of speech. During our conversation she asked me to try facial movements and explained that from what she could see I have Bells Palsy. So now I had 2 experts confirming my thoughts, my GP and Dr Google. She explained that she would phone one of the Ear, Nose and Throat Consultants at my local hospital rather than do an instant referral because of everything going on at the moment, (i was a little relieved not to have to go at the moment but suspect in the future I will).

A short while later, another phone call and the advice from the Consultant was being relayed. In brief I had 2 choices. The first was an 85% chance of return to full facial function (This is important because it is not about the cosmetics for me) or 95% chance of full return with steroids. I did feel a little under time pressure but even in the early stages of this the small things like blowing my nose are difficult. I chose to go with the steroids for the best chance. It was explained that I need to self isolate and at the moment that is so important as not to pick anything up. I'm also taking medication for the herpes virus to help with the nerve problem that causes the Bells Palsy.
I've had chickenpox twice as a child and shingles about 10 years ago. One of the things I'm finding most problematic is the dry eye so regularly adding drops and wearing a handmade eye patch is helping.

My family have been so supportive and added a little tender humour. A proper eye patch has been ordered by hubby. My Daughter found me a facial physiotherapist and I'm following her demonstrations twice daily. My Son got in touch with a friend for advice which has proved helpful. My sister who is and expert in steroids gave me valuable advice while taking them.

So fast foward to Sunday morning, another cocktail of medication, facial exercises,getting dressed without catching my open eye with pj top and then the hurdle of washing hair without getting shampoo in itπŸ™†. Copious amounts of eye drops while drying so my eye didn't become sore.

I love to be busy and if you really know me I never stop doing something, sewing, knitting,stamping, colouring. Over the lat few months I've made scrubs and bags for the NHS. Face masks for friends and family. Dt projects which I love being part of. Cleaned my house which is swearing in the crafting world.

I love deadlines and always have some form of targets or stress in my life. I've learned this last 5 days that, in the main I've been able to protect my mental health over this testing time but my physical I have not been able to do anything about. My body has shown me that stress has taken it's tole and I am not able to fight it only now everyday gradually encourage hopefully a return to my full functioning face.

While typing this I realised how much benefit I took from touching typing helped me with a young friend a few years ago.

I decided to do this post with the hope that anyone going through a tricky time at the moment will either write it down or talk to someone as a therapy. I haven't written this for a pity party just it may help someone. I am positive about how I will overcome this problem, others are going through far worse than me at the moment.

So this is todays me which is the most I want to share


Please take care
Debbie xx