Tuesday, February 21, 2017

living with Myalgic Encephalomyelitis for my friend Anne



Yesterday I heard the sad news that my friend Ann had been told she has   Myalgic Encephalomyelitis so today I am writing this to help her and may be just help others. These are just things I have learnt and how I deal with things.

Medication; have pain killers, but only use them when you REALLY need to do so. Antihistamine tablets are valuable fight against things as is folic acid, remember M.E. attacks the body each day and these help fight the worst of it. Get regular check up for your thyroid as this is also attacked by M.E.

Light and Sound: get lower wattage light bulbs, turn down the light on your lappy or pc and adjust the brightness of your TV. Get "black out " curtains to cut out the light at night. Artificial light is particularly stressful for M.E. sufferers. Natural sun light can be filtered, if you wear glasses get anti glare coating, wear a hat that shades your eyes and if the sun is very bright then sun glasses help. However natural sun light is good for you and helps with M.E. so adjust things so you can get out when you are well enough. Sound you have little control over apart from making adjustments in your own home. It is very painful and I haven't found a solution apart from being able to get out to someone peaceful to try and relax and even then that is only possible when you feel up to it.

Brain fog, well write things down so you remember them and try to explain to loved ones that it happens and they need to be aware of it. Again I have not found a work around this and when I have I can't remember what it is. Don't worry when you make mistakes and can't see them, a good spellchecker can help, but sometimes just call the thing you can't remember a thing.

It is important to "listen to" although it is something none of us do, what your body is telling you. If it needs to rest it needs to rest. Usually I find my throat starts hurting when I have reached my limits and know I have to rest. All of us push ourselves beyond this because we want to be normal, however you have to accept that you are now disabled and not like you used to be. There are days when you can do things at first but this goes down to hours, so do what you can in those hours and rest when you can't.

Accept the fact that sleep will not improve your mind or body functions, it is just a slowing down not the relaxing refreshing thing you have been used to having.

Establish routines; this is the most valuable lesson I have learnt. I have a routine in the morning of getting up and making coffee and feeding IsisKitty and using social media and then resting. When I can remember I eat at the same time each day and shower at the same time. Having this routine helps me and gives me a reason to get up even when I don't feel like it or am not capable of doing so. In between the routine I do have to rest and in truth most of the day is resting.  Try to go out at least once a week for if you do not do so it is very easy to be afraid of doing so and retreating from life.

Every body is different because as with any disability Myalgic Encephalomyelitis affects us all differently. There may be times when it does seem so bad and others when it is really, you just have to live through whatever it brings you. You have to accept that you will not recover from it and your live will never be the same again, that is hard. HOWEVER THE WORST THING YOU CAN DO IS LET IT TAKE "COMPLETE OWNERSHIP" OF YOU AND YOUR LIFE - IT IS SOMETHING YOU HAVE NOT WHAT YOU ARE. STAY POSITIVE

I hope some of these things help, but each of us find our own way. I went from being a very active out going person to one who now can really on communicate through social media and not even then on my worst days and most of that is copy and paste. Yes I do my blog and try to keep to my routines, but this week I've not really been able to do. After 10 years of starting with it and now knowing it is having more attacks on my body I know what to expect more or less, but each of us is different, so your pathway will be different. Just remember you are living with it, and do your best.

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