Monday, 24 February 2014

With ME Comes Frustration

Up until about half an hour ago, today was a good day. This afternoon I have been in the oxygen tank for about 75 minutes. I think it is starting to help increase my energy levels for a couple hours after my session, which is brilliant!! I have met a lady that also uses the oxygen tank that has ME and today we had a good chat and bounced positivity off of each other. I came away from my session feeling really positive and determined and also with a slight increased energy level than usual. At that moment I felt like I was battling ME head on with a strong mind. 

Now, just a few hours later, I am full of frustration (and pain). I was invited by a friend to take part in a pub quiz with some friends and wanted to go along and join in. I was picked up and taken there and was enjoying myself but was suddenly overcome with tiredness and pain. I had to ask my Mum to come and collect me as I wasn't well enough to stay and therefore could not take part in the quiz. I am so frustrated that I cannot do the things that I want to do. I could not sit down in a chair and answer a couple of questions. I needed my bed and to be in a comfortable position and I will be asleep very shortly, I am sure. 

I have had a busy day compared to usual but I still find it very hard to accept that I cannot do all of the things that I want to do. I have to pick and choose the activities that I take part in, however I find this very unfair and frustrating. I want to be "normal" and be able to do what I want, whenever I want. I often think that I have accepted my illness, and I think I have to a certain degree but clearly I have not fully accepted it otherwise I would not be writing this post! 

In the mean time I am going to try to work more on my acceptance, 

Take care and try to accept something in your life that you cannot change, 

Rachel x 

Sunday, 23 February 2014

My Dear Grandad

I've always loved my Grandad obviously but up until recently we never really had a good bond. I saw him at family birthdays and get togethers (which works out about 1.5 a month!) and we have always got along but I'd never had a special relationship with him. 

When I was younger I used to see my Nanny and Grandad pretty much everyday. My Nanny was my world. I absolutely adored her. As far as I was concerned she was the best thing since sliced bread and although she's sadly passed away now, I still think the same. Therefore, when spending time with my Grandparents, I was stuck to my Nan's side and didn't really spend any time with my Grandad, only to repeat phrases such as "sod it" and "crumbs", two classic Grandad sayings. My Nan couldn't help but laugh whilst telling off Grandad for saying "sod" in front of me. 

You probably know that I truly believe that "everything happens for a reason." I have not worked out the reason for me having ME/CFS yet, but maybe it is to allow me to spend increased time with my Grandad and develop our relationship. As I am not working I am now able to spend a few hours with my Grandad a week, and this has very much become something I look forward to. I often go round to his house after I have had a HBO session and have a little bit more energy than usual. I love him but he can be hard work! Usually we just chat and have a cup of tea but sometimes he can be very grumpy (but can't we all when we are tired and hurting?!) and demanding.

If I was still healthy and working I know that we wouldn't have this great bond we now have, due to the amount of hours I was spending in the gymnasium and fitness gym. Therefore, I am actually thankful to ME/CFS for giving me this opportunity to spend precious time with him. 

I didn't think I would ever be thankful to ME/CFS but in this situation I certainly am.

I can now say I adore my Grandad as well as my Nanny. 

Take care,

Rachel x

Sunday, 16 February 2014

Live In The Moment

Last night my Nan had a party to celebrate her 77th birthday so I was out for a few hours with my family, having a drink and eating lots of food and cake! It was lovely to have a get together and see the family I don't regularly see!

A large part of my life at the moment, is television. I record a lot of programmes, and this gives me something to do when I just can't handle watching This Morning or Loose Women anymore! Therefore, last night I had a few things set to record and I caught up with them this afternoon! One of these programmes was The Jonathan Ross Show. If you watched the  show last night you will know that Abbey Clancy, James Cordon, Uma Thurman and Andrew Marr were on the show. I often fast forward when a person comes on that I'm not interested in and was ready to fast forward when Andrew Marr came on. I then saw his walking stick and was suddenly interested in what he was going to say. That sounds a bit sick, but last I knew he was a healthy man so was intrigued to know why he now walked with a stick! 

If, like me, you don't know what happen to him, he had a stroke. He believes it was the result of pushing himself so hard on the rowing machine to achieve a target he had set himself. He felt good for achieving the goal but knew something wasn't right. He had a "blinding" headache and was seeing flashes of light that evening. He woke up the next morning and couldn't move. He'd had a stroke. 

Anyway, on the show Andrew Marr spoke about how he has re connected with a hobby he had when he was a young child, drawing. He carries a notepad around everywhere with him and draws what he sees and things that inspire him and spark emotion in him, instead of writing these things down. 

He also talks about trying to live in the moment as much as he can. I think both you and I can take something from this. You never know what's going to happen, what's around the corner. 

I feel that Andrew Marr's and my story are similar in ways.. Both of our illnesses are most probably connected to exercise, although neither can be certain. Both him and I can not, for the time being, do something we love - exercise! Both him and I have had to find things that we can do whilst being poorly, his is drawing and mine is reading. 

However, I definitely need to take his advice and try to live in the moment! 

He inspired me and spoke some wise words.

Take care and try and live in the moment as much as possible,

Rachel x

Monday, 3 February 2014

The Dreaded Payback

After over two years I still haven’t got the hang of pacing myself. The doctors love to tell you to pace yourself and not do too much on your good days. However, I go against this suggestion time and time again and end up paying for it and being quite poorly and often am not able to get out of bed. I never know when my next ‘good day’ is going to be so I make the most of the energy I have there and then. The time following the energy-sapping event is not fun. But I am aware of this beforehand so I only have myself to blame (and this stupid illness!)

Yesterday I went to Middle Farm and then for lunch with some of my friends! We all had such a great day, laughing until we cried, being chased by chickens and hiding in bales of hay. It was lovely for us all to go on a day out together! I do not resent my day out in the slightest as I had lots of fun and enjoyed myself, but days out mean payback. This is a small price I have to pay if I want to have fun with my friends and I’m willing to pay it!

Today I am experiencing payback. I am exhausted. I know I’m always exhausted but I’m really really exhausted. I didn’t have an oxygen therapy session today, which was a blessing in disguise as I’m not well enough to leave the house. I managed to get from my bed to the sofa for a couple of hours and now I’m back in my bed. My beloved bed!

If I know I am going to do an activity on a certain day, I have got in the habit of reserving the next day as a bed day as I know I will be in even more pain, will be even more exhausted and even more fuzzy headed than usual. Having this system is no doubt bad for me. I should be reserving the energy that I have. However, if I didn’t go for a coffee at Starbucks with my friend or pop round and see my Grandad, I would feel even more deprived of life than I already do.

One day, hopefully I will get the hang of not overdoing things too much, but pacing doesn’t work in real life. Situations are constantly changing so you can never pace yourself completely but I would love to not have to reserve the following day as a bed day. Although, how do I know that day wouldn’t have been a bed day even if I didn’t enjoy myself at the farm? 

Take Care,

Rachel x