My name is Ashley Davey.

 

I am 40 years old and live with my husband and two children on the beautiful island of Islay.

Islay is well known for its scenery, its lively music and of course best known for the famous Islay malts.

Islay is less well known for its high incidence of many long-term conditions.

I suffer from multiple chronic conditions. Some so rare that most on the island, including the GPs have never heard of them.

I have Elher-Danlos syndrome (Known as EDS).

I have Functional Neurological Disorder (or medically unexplained neurological disorder).

I have Bilateral intermediate Uvititis which comes with added extras- Macular Oedema Vitritis and Optic Disc Swelling, to name just a few.

Each condition comes with a long list of other complications, symptoms and side effects of medication. All are mostly invisible.

The symptoms are fatigue, pain, vision problems, muscle waste, breathlessness, heart palpitations.

The side effects of immune suppressant therapies have left me with liver problems and on one occasion near death with sepsis.

On the positive EDS helps prevent wrinkles, makes you look younger and obviously incredibly good looking.

Living on an island support and resources are limited.

After diagnosis I only saw the island GP. Some consultants for my rarer conditions live in London, not easy access from Islay.

A major concern is that some conditions are genetic and hereditary. There is a 50% chance of passing them on.

My 18 year old son Lewis and 10 year old daughter Phoenix have both been tested.

To my dismay both tested positive for EDS.

I needed to educate them on their symptoms and stay calm and strong for them at a time when I was struggling with my own symptoms and feeling far calm and strong.

I didn’t know where to turn and who to talk to.

One day while at my local pool I met a girl called Claire who introduced herself to me as the new Outreach Worker for people with long term conditions from the MS Centre, Mid Argyll.

Claire explained her post was created with thanks to the funding from The Alliance and that she would travel each month from the centres base in Lochgilphead, Mid Argyll to Islay.

The MS Centre were holding a Self Management workshop at the pool, which I was invited to.

This started a strong, trusting relationship with Claire and the centre which has developed over the past 4 years.

Claire started home visits and also developed a close relationship with the kids and my husband.

She helped them to understand my symptoms and why I got frustrated or had a low mood at times. Using props to mimic my symptoms the family all got to “Try on my condition”. Arm weights for fatigue, vision altered glasses, rubber gloves for numbness etc.

We have the props with us if anyone would like to try on My Conditions.

I was also given vouchers to allow me to choose therapies I felt would help me physically and a listening ear to help me emotionally. 6 therapists signed up to accept the MS Centre vouchers.

I now try and do what I can to self-manage my conditions with help from my family and the treatment and support I receive from the centre.

I now don’t worry so much about my future or my kids futures as I now have a better way of coping.

Claire and the centre have helped me realise my conditions are not the end of the world. If they do progress and get worse, I have a team behind me- made up of my family and the centre to help me to cope.

I would like to read some statements from my family-

Phoenix – My mums muscles got better ( I think she means I am stronger – please just believe me I am not showing my 6 pack).

Lewis – Mum struggled to cope with everything but since claire came over there are noticeable differences in my mums attitude shes much happier and finding things easier to cope with.

Calum – Ashley is not as depressed as she was!

It is so good to talk to someone who understands. Even if I go to the centre on the mainland everyone now knows me and I feel welcomed.

I have changed , my family has changed, our lives have changed

In the past year I have seen my vision of a support group on Islay become a reality. With help from claire , the local community and the Mactaggart Leisure Centre I now successfully run an inclusive group for people who were living in isolation or struggling with coping with a long term condition. There are no barriers – all are welcome. Before there were only groups for over 65’s.

Now my group which I named “Chit Chat” helps all.

I feel fulfilled when helping others change in the ways I have changed.

Nothing can beat hearing someone who I saw struggling say.

“I have changed”

“My family has changed”

“Our lives have changed”