"Journey with M.E./CFS"

About: NHS Fife

(as the patient),

After curve ball after curve ball (that's what I call the big life stresses), as a single mum of two, with secure long standing senior management employment, somehow my ability to cope had not just diminished but vanished.

With long standing but treated Hashimotos, my crippling pain, debilitating fatigue and everything else that came with it had been assigned to this condition. My life spiralled out of control and severe depression crept in along with anxiety related symptoms. I lost my job, couldn't get out of bed and didn't want to leave the house or communicate with anyone. In my eyes, at that time, my life was over and not worth continuing.

My attendance at my GP was almost weekly - and included hysteria and begging for help.... months and months of conversations where all my conditions were still assigned to my UAT but eventually after some two years I was sent to a Rheumatologist, a very lovely lady, Dr G. I had a brief but life changing appointment with her and she referred me to what was and continues to be my saviour.... KA - Specialist Nurse at Long Term Conditions Group, Ladybank Clinic.

Its hard to put into words what has happened since then. But without Keith I don't think id be here. Id lost nearly everything that was constant in my life and he has been that ever since the first day I had my initial appointment. I was sceptical initially and not necessarily fully ready to engage with him, but that soon changed and now I would recommend him to anyone and readily do. The heavens are not high enough to sing his praises. The support, patience, advice, humour, practical coping strategies all tailored to meet my individual needs was amazing. Something underrated and notably different about KA's support and appointments was time. No 10 or 30 minute appointments or an hour and sorry your time is up. He had time and it was as much or little as I needed.

My support has become less intense some two years later, but KA continues to offer me support despite the fact that I know there are more needy individuals and his case load is crippling. My life isn't the same and KA helped me accept it never will be, I am still susceptible and the famous word 'pacing' is what its all about. But I've found a new way forward, along with hope and worth, things id lost.

Nelson Mandela was quoted as saying 'The greatest glory in living lies not in never falling, but in rising every time we fall'

I couldn't have risen without KA.

Do you have a similar story to tell? Tell your story & make a difference ››


Response from Louise Ewing, Patient Relations Manager, NHS Fife

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Dear "Phoenix55"

Your story has brought a tear to my eye this morning as your words clearly come straight from the heart! To have hit rock bottom and to come back up again is nothing short of inspirational so can I thank you very much for sharing.

What your story does perfectly, is set in context the fundamental importance of relationships and what you go on to describe in terms of your interactions, is what we in health recognise as a person centred approach. It is refreshing to hear of the real value in having honest conversations with people and focusing on what matters to them.

Today you have inspired me and I hope you don't mind but I am about to share this very widely so that others can see how important this approach is!

Many thanks

Louise Ewing

Patient Relations Manager

NHS Fife

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Update posted by Phoenix55 (the patient)

Thank you Louise and I am very glad I embarked on my first story here and can already see that there are actually people listening and it has value.

Still skipping past all the fine detail of my return to better health, life is not without ongoing challenges for us all. I do find I am very easily thrown back into crisis but I have the ability to recover quicker than in the early days and therefore it is a more manageable condition for me now. But this is only the case when you have support from professional people around you like employers, housing associations and those in the health and social care service irrespective of which sector these come from.

What is also perhaps worth mentioning is that KA, probably inspired me to where I am today in more ways than he knows. I realised on my journey just how prolific mental ill health is and as a coping strategy of mine was to become better informed on my own conditions, which KA assisted me with. I left my marketing background of some two decades and have embarked on a new career supporting people the way KA supported me. The personal commitment and interpersonal skills that KA supported me with time after time was inspiring. I could only dream of aspiring to KA’s levels at this stage in my life, but certainly I have completed various levels of health and social care related qualifications, all of which was challenging to say the least but I’ve got there.

It’s a rocky road, but it’s nice to have a future again. Everyone needs hope

Response from Louise Ewing, Patient Relations Manager, NHS Fife

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Martin Luther King said, "we must accept finite disappointment but never lose infinite hope!"

Kind Regards and keep going......


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Response from John Wilson, Chief Executive, NHS Fife

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Dear Phoenix55

I can see that you have been through some difficult times recently. I am so pleased, therefore, to see that you feel you have found good support from the Specialist Nurse who is now working with you.

Thank you for contacting us about your experience and taking the time to tell us how your life has changed. I really appreciate that.

I hope that your situation will continue to improve.

Best wishes,

John Wilson, Chief Executive NHS Fife.

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