Sylvia's story

"I couldn’t receive better had I been the Queen Mother"

“My name is Sylvia, and in 2004 I was diagnosed with CIDP (chronic inflammatory demyelinating polyneuropathy). It all began when I started feeling unwell for many weeks and had to use walking sticks to help me move around.

“My husband, daughter and I decided to go into Bedford shopping one day; this was the day that things came to a head. I felt so weak and didn’t think I could get back to our car. My daughter managed to get a chair from one of the shops for me to rest on, after a while I eventually managed to walk to the car.

“The next morning my legs just gave way, I felt so weak all over my body. I was admitted to Bedford Hospital and whilst eating an apple found that I was dribbling, which I thought was quite strange but I didn’t say anything. The next day my eye almost came out of its socket and my face had dropped, to which I said to the sister ‘I think I have had a stroke’, but I hadn’t.

"Since having this condition I have been unable to continue with my hobbies, which were ballroom dancing and classical singing. I have sung solo in Church, been a member of choral societies, Cornish choirs and the Danesborough Choir in Bedford. I also used to swim, but this is no longer possible.

A great sense of calm

“I had many occupational therapists and physios visits while in Bedford Hospital, it was these professionals who referred me to St John’s Hospice. I had heard of Sue Ryder and the hospice work but was totally unaware of the other services they provided.

“I have been attending the lymphoedema day clinic for treatment for a couple of years now. As my husband is unable to drive anymore a volunteer collects my husband and I from home, takes us to St John’s and then brings us home again. I go every six weeks and as soon as we walk through the doors, we both just feel a great sense of calm.

“Janet at St John’s used to give me my massages, special stockings for my legs and place me on a special massage machine but I now see Donna. Both Janet and Donna are wonderful, they have such a calming effect on me and I feel able to talk to them about my worries, which is such a help. The treatment I receive is so relaxing and it is lovely talking and having a cuppa. My legs feel so much lighter after treatment as a lot of the fluid in them has been drained away.

“I receive brilliant treatment from both Bedford Hospital and St John’s Hospice and I have always said ‘I couldn’t receive better had I been the Queen Mother’. The only difference in care is that at St John’s I feel like I am the only person receiving special personalised care, and it is such a happy place with lots of smiles.”

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