It was eight years ago when the diagnosis of Primary Progressive Multiple Sclerosis was confirmed for my husband.
Our lives changed overnight and many aspects of our life were affected – relationships, employment, physical and emotional changes, together with our dreams. As day to day tasks become more challenging, planning and patience are necessary, spontaneity isn’t always possible. As a couple, we do try to remain positive and hopeful, but many emotions present at different times, frustration, exasperation and tiredness, anger, sadness, disappointment, guilt and grief for both parties.
A chronic illness like this can leave you feeling very isolated as family and friends drop away.
I was introduced to BrainLink through the MS Carers Group. BrainLink were running a course for carers on how to look after their own health. The course enabled carers to come together, whatever their circumstances. We learned strategies to avoid carer fatigue and to navigate many of the services available for carers. It is very difficult to find out what is available when you are busy caring. Sometimes there is very little time for yourself, when you spend so much time looking after somebody else.
The impact that BrainLink had on our lives was great. When I think about BrainLink, I think about people who care for carers. It is all about how to assist carers. I have been involved with BrainLink for some years now and had the privilege and joy of attending activities that have been helpful in “chilling” out from the caring role for just a little while. It could be anything from a valuable seminar/talk, a class, coffee morning, movie, outing or a retreat. Just for a short time to do something for myself. Time to recharge, learn or meet other folk who are carers too, but to share in an activity away from the routine.
BrainLink assisted me in helping purchase a walker for my husband that would have taken some weeks to procure (through the usual channels and paperwork). What a great deal of time and angst this saved.