• Brandy - My Caring Role For Emme

    Hello all, Brandy here.

    I am a Fibromyalgia, ME, Rheumatoid Arthritis & Osteoporosis carer for Emme. I thought that I would let you all know what a caring role entails and maybe it will help other carers on Foggy Friends. I hope so anyway.


    Just up and checking my email before the day starts for everyone else. It’s good to have a moment to myself – though it’s early, and I could probably do with the sleep, the house is peaceful and quiet, and it’s just me and the laptop.

    Emme my partner has Fibromyalgia Syndrome, and spends a lot of time tired and in pain, as well as having all those other symptoms that seem to go with this horrible illness. It all started after a bone marrow transplant – her bones have never healed. The pain seemed to trigger off something that thankfully didn’t take too long to be diagnosed. We feel lucky that she had a sympathetic consultant, who first had her on a bunch of medications and gave her occupational and physical therapy. Things just didn’t get any better and it was all very slow. Life changed for us both and I gave my job up at the bank where I had worked since leaving school at the age of 17. There had never been any question Emme needed full time support.

    Emme had to give up work because of the pain, and because of what she calls ‘Fibrofog’ – a vague fuzzy dizzy feeling that stops her being able to think straight. In the early stages we both just believed that it was just a blip and after a few months she would return back to work. However this was not to be. I had never taken a caring role in looking after anyone with a medical condition, yet I found myself in at the deep end. I spent a lot of time online typing in Emme’s conditions and trying so hard to absorb all the information, believe you me there was pages of it; but in the end I recognised that there were 5 key elements to the concept of the expert patient:

    (1) Openly acknowledging that the person with the “Medical Condition” knows a lot about themselves and this should not be ignored.

    (2) Listening to the person.

    (3) Alongside that, the commitment to treating the person with respect and dignity.

    (4) It is essential that professionals give the person “Real choice” and not just a lecture.

    (5) Acting on what the Expert patient wants, rather than claiming to “know best” This must mean understanding that someone is always more than their illness or impairment and has a right to their life, in the way they choose to live it.

    Before Emme was a Fibromyalgia sufferer she doubtlessly had been very independent. Before she was afflicted with the condition she was previously very energetic and lively and spent a great deal of time on the move. However the condition took hold and she found her level of mobility had seriously hampered her physical abilities. This is why I came to her aid. As a carer I was undoubtedly required to help with the day to day stuff like washing, cooking, cleaning, personal hygiene etc. For most Fibromyalgia sufferers they may have periods when their conditions abates and allows them some freedom whilst the more chronic sufferers find that each day presents them with new challenges. Emme was finding every aspect of living with her conditions chronic.

    As a carer, the first thing I considered – and one of the most important – Was how would I be able to assist Emme? Firstly I was in full charge with the responsibility of making sure that she could get from A to B without having a fall...This took many months and personally cost us a lot of money having our home adapted to enable her to have a better quality of independence . I did apply for help from the Social Services for help with funding but we were refused point blank due to having savings etc.

    I felt extremely frustrated with all the agencies.. let down... and felt sorry for Emme who was finding it difficult emotionally to come to terms with being so unwell...What stands out as I write this is that Emme loved driving and her biggest loss was her beloved car. Her consultant had put her on morphine and said she wasn’t safe on the roads. Just another very frustrating time in both of our lives. As the carer I take her to all her appointments at the hospital etc. Emme has become quite a back-seat driver...lol.

    As a carer one of the most important roles is to provide her with emotional support. She was and still at times suffers bouts of depression especially when she is unable to participate in the activities that she once enjoyed before the illnesses struck. I am not only Emme’s carer but also her long term partner and certain aspects of our relationship like sexual appetites had seemed to diminish which had a huge knock on effect on myself. But like everything emotional support is paramount and sex really is only one aspect of living together. We did however both sit down and have a natter about the whole issue and have solved them.

    As a carer, I do find it very difficult at times and extremely frustrating. A couple of years ago we both agreed to outside carers, which has enabled me to go out and recharge my batteries which has made a huge difference in our relationship. We now have a full time carer three times a week so I plan my own days off. This is important for all carers ensuring that they themselves do not get emotionally or physically drained. You need time for yourself.

    I look back over the years. Yes, I do sometimes miss meeting Emme from work or vice versa and spur of the moment decisions and we would go out until all hours burning the candle at both ends. The fun we had back then.. shopping until we dropped... but we have both been extremely fortunate and have grown in a different light.. having new interests... new friendships. Infact I believe that we have grown closer emotionally... maybe just maybe I am biased.

    The other Carer comes in on her days and I find it very hard to let go. I know all Emme’s likes and dislikes. She pushes me out the door to take time out and I find that I am doing everything in double time to get back to her. Emme knows how I feel... it’s all about trust and knowing deep down that I have been there from day one. Maybe I just don’t want the time out and prefer to have it when Emme is able to accompany me.

    Thank you Foggy Friends for taking the time to read this. If there are any carers who would like to PM me please feel free to do so. You never know I may learn a new trick two...lol.

    Hugs to all, Brandy xxxxxx