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Northern exposure

Northern exposure

Living in a remote location is challenging – especially for people with M.E. So how do they cope? Pamela Binny, who lives in Lochaber in the Scottish Highlands, gives us an insight.

We in the Highlands count ourselves lucky to live in an area of outstanding beauty with its iconic landscape and varied wildlife, slower pace of life, and folk who have time to stop and chat and help if they can.

Generally speaking, there is a marked inequality in healthcare for people with M.E. all over the UK. In Scotland, there is no service dedicated to M.E. where patients can gain access to consultant care. There is one specialist nurse for M.E. in the whole of Scotland (Fife region), so in the Highlands we have no one.

The nearest hospital is several hours’ drive away – longer if a ferry or two are required. There is no consistency in referral of M.E. patients. Some, following diagnosis, are referred to rheumatoid, psychiatry or pain clinics by GPs for advice on symptom management and, of course, there are the inevitable waiting lists for services. If referred to psychiatry, there are further waiting lists for Cognitive Behavioural Therapy (CBT) practitioners and, after all that, many patients find that neither psychiatry nor CBT can help deal with their biological illness.

Wherever one lives, one can feel just as isolated as in the remotest part of Scotland. However, factor in poor mobile phone coverage and inadequate broadband and this will make keeping in touch even more of a challenge. Social media is a lifeline to many, particularly as it can be difficult to meet others with M.E .due to geographical distances (it’s a six-hour round trip to the closest steering group member). On the plus side, extended families who have lived in the area for generations and friends who have not moved away for employment can be a big support in an area where paid carers are hard to find. Generally speaking, people tend to have time for each other here, and to look out for each other.

Work, housing and travel

For those with M.E. who are able to work, finding appropriate employment opportunities with supportive employers can be a challenge, wherever you live. With industries here largely limited to forestry, fish farming and tourism, Highlanders tend to be entrepreneurial and often have more than one job! They may work in tourism providing hospitality when demand is high, while doing their ‘day job’, running a business or a croft.

Affordable housing can be difficult to find, due to holiday homes reducing availability for local people. People with M.E. therefore may be forced to live outside the area where their main support network is.

As for getting around with M.E., the Highlands is a sparsely populated area, which means public transport, the concentration required to drive long distances to see friends or go shopping, or the cost of running a car can pose problems.

The long dark nights in winter with the threat of deer on the road makes driving difficult, as does the weather: snow, flooding and landslides.

It can be just as challenging in the summer with increased traffic, often on single track roads, due to visitors coming to enjoy ‘the peace and quiet’. Public transport is much more limited than in more densely populated areas. There are few train lines, buses do not run frequently outside of towns, and ferries face adverse weather conditions and excessive demand in summer.

Having read about the reality of living in the Far North, one might ask “Why would anyone want to live here?” My response would echo the sentiment of a famous jazz player.

When asked what rhythm was, he responded “If you gotta ask, you ain’t got it.” If you are mostly happy with your own company and resourceful enough to deal with the challenges, then it’s a great place to live. Come and see, stop for a dram and join in with the craic.

Pamela is an active member of the Lochaber M.E./CFS Support Group, and a steering group member of the new region-wide M.E. Highland & Islands Network.

M.E. Highland and Islands Network is a small but growing group who, among other things, aim to link people with M.E. and their carers across Highland and the Islands. For more information, email.