Hello everyone. I have been receiving help from the Yorkshire Fatigue Clinic yorkshirefatigueclinic.co.uk/ so thought Id share some tips. Its run by Sue Pemberton and her team who include a immunologist and a nutritionist. Sue is a leading Occupational Therapist who has worked with ME for about 25 years, she takes it very seriously, is very supportive and is lovely. I was on a waiting list for a year for funding but was refused so have gone privately. Because the clinic is in Leeds Sue was able to do me a home visit for my assessment (Im in Durham, about 70 miles from Leeds) and now I have half hour phone sessions plus email contact at any time. Her fees are incredibly cheap compared to other private clinics and a lot less than the NHS would charge (£300 for the home visit and £35 per 30 min phone session). My GP told me that, in fact what the NHS would charge is often more than many private clinics. I will add to this when I can and at the moment Im not up to replying to comments because Im recovering from a bad reaction to a chest infection. Anyway, heres a few things Ive learned, bearing in mind Im paraphrasing so these are my words not Sues, and also this advice is geared to my personal ME and circumstances, which is severe and bedridden. As well as the following practical help Sue stresses the need to keep calm by learning stress management and relaxation techniques and to have the belief that we can recover. Keeping adrenaline levels low and dopamine levels up means we have more of the right chemicals flowing round our bodies, the ones that promote healing rather than do damage. The body struggles to recover if it is in a stressed state. - Break up activity, even such as eating a meal, with little rests, stopping what youre doing, closing your eyes and take a few controlled breaths, even if it is just for a few seconds. Its a great way to give the mind and body mini breaks, and when recovering from viruses is a great help in knocking down the inflammation and adrenaline the body produces whilst infected. - Have a schedule of long rests, spending them lying down flat instead of propped up. The body uses less energy this way as the blood pressure isnt going against gravity for eg. - Throughout the day try to regulate time sitting up as well as lying down. And when going from lying to sitting, or sitting to standing, do it slowly and gently, pausing a while and allowing the body time to adjust. - When doing tasks or movement be aware of your breathing. Sometimes we hold our breath without realising. We need to make sure we are oxygenated during movement. - Limit contact and talking with people to short periods of time. People use up a lot of energy. - When carers or other people are in the house, wear headphones with nature sounds etc playing. If the brain cant hear them it will help calm it down to being so alert to their presence. Even when not in the same room they can be very wearing. - The carers are notorious for ignoring written signs especially with things like the washing machine. One way of dealing with this is to tape your sign over the programs already printed on the machine, so theyre forced to read it. - Instruct carers by use of a white board if needs change, rather than having to explain verbally. Let them know that talking is detrimental to health. Agree on a visual cue, like putting on a eye mask or headphones, which means that you have to rest. - Eat every 2 hours, even if its just a small handful of nuts, so as to keep a constant energy supply going. - Good quality antidepressants in liquid form can be taken as a tiny dose. They may not be able to act as an antidepressant but will have a general calming effect on the system. Citalopram for example. - Dont wait until you are desperate to take painkillers or the anti anxiety drug propranolol, they are more effective taken on a regular basis. Although be aware that some, such as codeine can cause fatigue. - People with ME can have an inflammatory reaction approx 5-6 weeks after a viral infection. Keeping adrenaline levels down will help this to pass quicker. - If we have a relapse it doesnt necessarily mean that we have done anything wrong or have returned to the beginning. ME recovery is a rollercoaster and set backs are always expected. How we react to the setbacks have a bearing on how long they last. - How quickly we recover from a relapse is more of an indicator of how well we are recovering rather than how we are doing in the good times. - ME causes inflammation throughout the bodys tissue, along the spinal cord and in the brain. Pain and low mood can add to the inflammation and inflammation can add to the pain and low mood. - Pain can be eased by temperature and pressure as it a good tool in distracting the brain. So hot or cold compresses regularly (4+ times a day) can reduce inflammation caused by pain. Keeping your awareness on the temperature makes it more effective. - An effective way of reducing leg or arm pain is to have one hand or foot in hot water and the other in cold. This confuses and distracts the brain which can override the pain response. - Dopamine, the brains feel good chemical, can act as a pain killer and anti-inflammatory. So find ways to increase levels. - Compassionate hugs can raise dopamine levels, imagine them if theres no one at hand! When a child bangs a knee a cuddle and a rub on the bruise (pressure and heat) makes them feel better. Its a way of tricking the brain that all is well. - Setting and achieving small goals can raise dopamine levels as well as keeping our mind focused on what we can do, how we have have made recoveries in the past and that it is possible to get better. - In ME our immunities off-switch is broken so it overreacts to infection and causes an inflammatory reaction. A healthy persons reaction can be as long as 8 weeks but they dont feel it. For someone with ME it is a lot longer (12+weeks) and we do feel it. - Be prepared that often many recovery techniques take longer because our bodies respond much slower than healthier people. This can also include the use of medication. Gentle patience and persistence is needed.
Posted on: Tue, 14 Oct 2014 09:51:04 +0000
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