My mum's story <3

Both my mum and dad were in the navy, meeting in Portsmouth and falling in love. My Dad, Colin, was a Chief Writer and my Mum, Sheila, a Dental Nurse, my mum leaving in 1988 at the birth of my brother. On 14th February 1992 my mum married my dad, becoming Mrs Sheila Evenden. My dad gained two lovely children Christopher and Stephanie. On the 6th April 1993, out popped me, their youngest daughter Olivia.

Whilst growing up, we had an active outdoor lifestyle where we loved to camp, hike and enjoy the outdoors. This was a great love as my mum became a cub Akela for one of Fareham’s Scout packs from 1999-2003. She was fully trained and took us on many scout camps, where we took part in activities such as archery, swimming, raft building, abseiling etc. We loved joining in as a family.

My mum enjoyed being part of the community whilst my dad worked hard for the navy and was away a lot until he left the navy in 2001. My mum and dad supported our primary school at the time, St Jude’s Catholic School, Fareham. Being part of their Parent-teacher association (PTA), my mum, even with a terrible fear of heights, abseiled down the Marriot Hotel, Portsmouth to raise funds for the school, and helped to support the school fayres and fun/sports days.

Throughout mum’s earlier life she tried her best to help and support others, completing the Race for Life in 2002, and then Portsmouth’s Great South Run the following year. My dad was also lucky enough to complete the Great South Run and the Stubbington 10k.

In 2004 she was a victim of a hit and run on the forecourt of her work. Although the hit and run driver was prosecuted, mum was left with long term damage to the lower part of her back and the muscles supporting it. Mum was informed by the doctor that she had Spinal Spondylitis and that she would eventually be wheel chair bound.

2004-2015 Mum had many visits to the hospital, some being emergencies, others being operations and outpatients visits for other ailments and tests. (Fundoplication’s, gaul bladder removed, Gastric Diversion, Double Mastectomy)

2014/2015 Mums visiting frequency to hospital reached a level to which alarm bells began to finally ring for the doctors/surgeons. They finally began considering investigating mum’s ailments, shortly after diagnosing her with Vascular Ehlers-Danlos syndrome; affecting the blood vessels and internal organs, whilst also causing Hypermobility. Even with this, still no findings on why she may be passing out and falling. She was unable to be referred to the falls clinic due to her being “too Young”.

During this time, mum became bed bound due to not enough space for wheelchair access around the house and being extremely immobile at times. She had begun to lose balance and the use of her legs, unable to use stairs and unable to claim for a stair-lift due the risk of her passing out and falling. A hospital bed was provided by the hospital that now resides in my parents ‘living’ room; right next the TV and coffee table.

Shortly after becoming bed-bound, mum became incontinent, being given a catheter, feeling as though she had lost all her self-respect and dignity. Due to only having a toilet upstairs the occupational therapist provided her with a commode. However, due to space in the house and her inability to move around to use it, this could only be used in the living room.

My dad finding this extremely difficult having to be a full-time carer for my mum, whilst also running a home and having a full-time job. The hospital and Social services finally started to support and put into place a care plan and support system where she would have two carers, 3-4 times a day to help support her in her daily needs and to support my dad.

Diagnosed Illnesses

• Asthma

• Depression

• Sleep Apnoea -requires C-PAP to sleep

• Incontinent- Suprapubic Catheter

• Dumping Syndrome

• Ehlers-Danlos Syndrome (Vascular and Hypermobility)

• Fibromyalgia

• Spinal Spondylitis

• Early on set Osteoporosis

• Syncope

Current Support

• Hand rails in house- Now not necessary as unable to move around house

• Sofa has been heightened – very rarely on sofa, due to falls

• Hospital bed in living room (Stays in this most days, with carers giving her full body washes and changing the bed whilst her still being in it)

• Commode- sits next to her bed in living room

• Static wheelchair- mum can no longer control herself, we have to push which is getting difficult

• Care Line

• 2x Carers 3-4x a day

I have decided to write my Mums story because I feel that it now needs to be shared. We knew that her circumstances would change, but not this much. We thought that she would still be the happy, strong, adventurous and independent women who I knew her to be.

It’s the simple things which all of us take for granted, and she is unable to do those.

She has lost the capability of getting up in the morning and being able to wash without support of others. She can’t do the things she loves most, spending time with her family, baking, and gardening. Even the simplest of having a hug with her husband without it causing excruciating pain. She is stuck in her bed.

Taking mum out of the house is a mission in itself. With no ramps or doorways wide enough for a wheelchair, the only way to get her from her bed in the lounge, out to the car is by transporting her to the front door where the wheelchair waits.

Recently the Portsmouth news wrote an article on my mum to share her story. We are pleased to say we have gained a huge response back and have had some lovely, kind feedback from all. Myself and my family are extremely appreciative of this. One thing that many people have suggested is to share a GO Fund me page.. so here it is.

In doing this page I would like to raise enough funds to have adaptations made to my parents house, to create a better quality of life for both my mum and my dad. Also from the article being shared, it highlighted how little advice and support there is for those who have similar needs to my mum. Therefore hopefully with some of the funds raised, we would like to make small donations towards both the EHLERs-DANLOS Support UK and UK Fibromyalgia.

Changes needed are as follow:

• Ramps in and out of the house for easy wheelchair access

• Wider doorways and walk ways for wheelchair/mobility access

• Downstairs Wet Room and Bedroom.

• Open plan kitchen

Any donation would be greatly appreciated.

Thank you for taking the time to read my mums story.

http://www.portsmouth.co.uk/news/health/portchester-woman-pleads-for-help-after-being-stuck-in-front-room-for-years-1-8209062