M.E and Me

So how was everyone's Christmas? It can be a stressful time of year for everyone, but particularly those who are unwell, or have a chronic illness. There's so much pressure for it to be the perfect Christmas: the perfect day, the perfect family and perfect presents. I was able to be up and 'on' all day, from 6am, up until bedtime, all without a nap or rest. My health is better this year and I know my body and condition well, I know when to call it quits and rest and when I can push a little more. Denys and I had a great day with his parents, the food was nice and we were both spoilt.  Upon reflection I'm able to see just how well I did this year physically, my pain levels have been very low which has a big effect on my mood and ability to socialise and enjoy myself. It caught up with me on Boxing Day when I was fatigued mentally as well as physically. Since then we have been taking it easy, just relaxing and enjoying this time of year together ...

I have been quite unwell for the last two weeks, something more than my regular M.E.  You see, since birth I have had problems with my bladder and bowel, I was in hospital several times as a child and regularly saw a paediatrician. I have a diagnosis for my bladder, but my bowel problems haven't been diagnosed. Doctors claimed that I would "grow out" of these, but sadly that didn't happen. As I said, I have been quite unwell, but I'm finally turning a corner and I am about 70-80% better and I couldn't be happier! I thought I would be poorly over Christmas, but now I should be a lot better and more able to enjoy myself. I am having to rely on liquid Oxycodone regularly for an abdomen pain have had since February, but if that is the worst of it I'm happy. I know myself and my condition a lot better than even a year ago; I know when to push and when to stop, when to keep going and when to give in and rest, and this is the most important lesson t...

I have backed away from social media recently because my health hasn't been great; I've been mostly bedbound since Wednesday.  You know what I miss when I'm stuck in bed... the little birds in the garden. Over the summer I started watching them and learning things about them. Since then, I have seen quite a variety of birds coming to the garden to enjoy the food and shelter we provide, we even saw little chicks playing and bugging their parents for more food.  There are about 30 house sparrows which seem to live in the bushes, they are the most vocal and demanding of food. They love chirping and cheeping and being generally noisy. When their young fledged I often saw them flapping their new little wings and squeaking wanting to be fed.  They eat from a mixture of hanging feeders and ground feeders. Different species have different preferences on how they like to be fed, for example blackbirds won't (or very rarely) use hanging feeders or anything too h...

I'm going to talk about my symptoms. It will be different for everyone, but see if you have any of them.  In the beginning, I started writing down any symptoms I had so I wouldn't forget any, and so that I could see if they were a part of my M.E. I suggest if you think you have M.E. or another illness, that you note down anything and everything. So here are mine: Dizziness  Sensitivity to sound and light Uncordination  Pain - I have pain in my legs everyday, it feels like a mixture of bone, muscle and joint pain. It usually worsens the more I do, especially using stairs. A lot of people with M.E. have generalised pain, like what you get when you have the flu. It's a widespread general ache in your bones Nausea - I have a medication to help with it  Weakness - mine is generally in my legs, they can visibly shake when I push too hard. They feel like they will give way, during those times I use a walking stick to support myself. Denys helps me when it i...

It's bad, worse than it has ever been before...  I keep  a bullet journal (which I can talk about in another post if anyone is interested) and in it I keep a record of my health. I monitor how often I have specific symptoms, one being sensory overload.  I have talked about it before, I know, and it hasn't changed, but it has gotten worse. I'm now getting it at least once a day, sometimes two or three times a day, and it is limiting my life. I can't participate in anything while it's happening, I can't hold a conversation, watch TV or even think. In go the earphones and on goes the music (which I am currently doing). It is coming on randomly, there doesn't seem to be any rhyme or reason to it, one minute I'm fine and involved in whatever I'm doing, the next I'm wanting to run for the hills. I don't know when it will happen and I don't know how to stop it. What are you meant to do? It hurts, it actually makes my head hurt...

What are you on about? The last two days have been challenging cognitively, trying to do something that should be straightforward and easy has proven to be otherwise. All I wanted to do was to get a better phone contract as my iPhone has a faulty battery and I’m sick of Apple, the system takes up over half of the storage on my iPhone and iPad, so I wanted to make a switch to Android, but it was so difficult to do.  I’m not good at being assertive or haggling for a deal, which is something Denys is good at, he got £8 off my previous contract. This time was different and EE made it incredibly difficult, it meant I spent an hour in a phone shop trying to figure out what had happened and understand why I couldn’t walk away with my new phone. There was a lot of jargon and very confusing suggestions and directions which made my brain hurt. I really struggled to follow what was happening and to make the decision that felt right. Thankfully, the lady helping me was more than willing ...