The harsh reality of living with M.E 

My personal account of living with M.E and how it has changed my life completely.

I got diagnosed with ME in June last year after suffering with it for nearly two years  prior to being diagnosed. I have also been diagnosed with Fibromyalgia which is another chronic illness that is also seen a lot in other people with ME.

Before I got ill I was a happy and energetic normal teenager who loved spending time with friends and family. I enjoyed school/ college and studied hard for my exams.

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Me before getting really sick

Since getting ME it has totally turned my world upside down and I am no longer able to enjoy the things I used to, I barely see family and don’t see my friends often, even if I do it can only be for short periods at a time. I have become distant from what were my close friends as I can no longer be social and go out shopping and have a good time with them like I used to. It’s hard for family and friends to understand what I’m going through unless they have experienced it themselves. Unfortunately M.E is still very unknown to the majority of many people and also the doctors meaning there is not much awareness for this debilitating illness.

I have a specialist who I see every couple of months who is helping me to move forward. I have to rest lots and remember to pace myself so that I don’t overdo it and leave myself bedridden and housebound for days, weeks and in some cases it can set you back months.

I have been forced to leave education because I am physically to sick to go. I cannot concentrate or focus on anything and being in company whether that’s with one person or more it can drain my energy so so quickly and it leaves me unable to function. I have missed out on my education, spending time with friends and going on outings and holidays.

I spend most of my days in bed as I am physically to exhausted and fatigued to get up. I have no energy and my body feels weak and very heavy like I’m being held down by weights. My body can be so heavy that I can’t sit up in bed and my head feels like a bowling ball and I find it hard to lift it off my pillow. It can make walking difficult and some days my body is too weak to hold up my body weight leaving me unable to walk and get out of bed. Just walking to the bathroom can leave me exhausted and having to rest or sleep after. When I go out of the house to go to the supermarket or just into town I am mostly always forced to use a wheelchair as I physically am so drained of energy and severely exhausted.

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Southwold beach, April 2016

I also suffer with light and noise sensitivity that some days I stay in bed with the curtains shut all day and when I’m in an environment with to much noise or multiple people talking I am forced to put my earplugs in to reduce the noise. If I am talking to someone and there are people talking in the background or the television is on I struggle to focus and hear what is being said to me and the noise all gets too much for me to handle. I get brain fog nearly constantly, leaving me unable to think and unable to speak properly and my words can come out all jumbled and don’t make sense.

I have episodes of fainting which is brought on when I have done too much and my body gets so exhausted it just gives up causing me to faint. I am also sick lots due to over activity. I feel dizzy and light headed during and after activity. I also suffer with motion sickness and sometimes I can’t even watch television. I still am unable to read a magazine or book properly due to lack of concentration and focus.

Another part of having M.E, also alongside Fibromyalgia is the pain. I get a lot of pain which can be throughout the whole of my body, mostly due to over activity however it can just come on and leave me crippled over in pain. I get a lot of hypersensitivity which means even the slightest touch can cause me pain. I have had constant hypersensitivity in both of my legs for a few months now which means even my pyjamas and bed sheets can hurt on a bad day. I also get a lot of headaches which can be caused from the light and noise sensitivity. Because I also have Fibromyalgia I have tender pressure points accross most of my body, my worst points are my shoulders, back and hips which can make walking very painful. I get a lot of muscle spasms and twitches which can become very irritating. I have strong painkillers that help to keep my pain under control most of the time. I also use heat and a TENS machine to help relax and reduce my pain.

I am very lucky that I have a very supportive network of friends and family. I have met a few people through social media which gives you the chance to speak to others who experience and know what you are going through physically and emotionally. It can be a real encouragement to know that you also have that extra bit of support. I am extremely blessed that my boyfriend has also got M.E although he has recovered enough to work 5/6 days a week which is good, although he does have tired days too. He looks after me well and I am so grateful for what he has and is doing to help me, along with his amazing family. One of my best friends also suffers from M.E so we have a lot in common and can give each other the love and support we both need.

Having M.E has also caused me to become mildly depressed and suffer with low mood. I feel useless and feel like I don’t have much self worth some days. I have put on weight due to the fact I am unable to be as active as I used to be and my medication can also cause weight gain. In the last 8 months I have put on nearly 4 stone which has knocked my self confidence. It’s hard to watch your friends and family do all of the things you only wish to do. I often look back on the time when I was happy and healthy which makes me feel very sad. I try my best to remain as positive as I can.

Living with M.E is not easy to say the least. I wouldn’t wish it on anybody and I just hope that there will soon be a cure that will reduce the suffering for me and everybody else with this cruel and debilitating illness.

 

 

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