A day to remember

I haven't blogged for a while, partly just forgetting to, but also because I felt I didn't really have a lot of positive things to say and I didn't want my blog to be purely negative thoughts and musings.

So, today I am going to share something positive....a goal that I have achieved.

Many months ago my Mum decided that for her 60th birthday she would like to go to The Ritz (London) for afternoon tea. At the time of booking I was a bit blase in thinking 'Oh my CFS will be better by then, I will be fine'.....wrong!

It hasn't just gone away and I am not fine however, after months of feeling concerned about how I would cope on this busy day....I did it.

Yes, I was worried, had a few panic attacks before the day, and barely slept the night before but I did it.

I managed it by walking slowly, sitting down frequently and getting an earlier train home that my mum and sister. But, it didn't matter. All three of us had an amazing time at The Ritz and great memories were made. It was nice to treat my mum to something special after all of the support she has given me since my diagnosis. I am so glad my illness didn't prevent me being there.

I am paying for it now...three days on and I am still feeling wiped out and in a bit of pain, but what I have learnt is that life isn't perfect and I should stop putting pressure on myself for everything to be perfect and run smoothly. Thats not reality and I should have such high expectations of myself. I can go with the flow and it will be ok, I will deal with it.

I will leave you with a couple of photos of me, mum and my sister on the day.

Dealing with setbacks

So its safe to say this past week I have had a set back in my progress with my CFS.

I have felt utterly exhausted and achy and have started to get a lot of pain, particularly in my legs which has caused me problems sleeping.

I have to confess to have let it get to me this week, have been very tearful and worried about it and anxieties about this illness have resurfaced.

I missed a family meal which I was particularly upset about. I feel like I let people down and that I miss out on so much.

Somehow I have got to regain that positive spirit that says 'Come on Clare, you can beat this'

Its my birthday tomorrow and am going to a spa for the day with a friend, so hoping a change of scenery and a pamper will do me good and help get my mindset right again.

Its a scary illness, full of uncertainties but I have to keep hoping and believing I will be well again.

An attitude of gratitude

So, here I am on another Sunday evening feeling grateful for a pretty decent weekend. I haven't done anything amazing but as anyone with CFS knows, some of the simple things we used to take for granted can feel amazing.

One of my highlights was that yesterday I felt well enough to go to the gym and do some exercise and strength training. I tend to go just once a week, usually on a Sunday if I have a clear day so I can rest afterwards. I get frustrated at only being able to go once a week as I used to go at least 3 times...however I know I am making progress and hopefully the day will come when I will be able to go more. For now, I am grateful for this once a week session as its a little bit of the old me and makes me feel good.

The second highlight of my weekend was meeting up with a friend for a cooked breakfast at the awesome Cafe Brittania in Norwich which is a social enterprise cafe set up to help rehabilitate and retrain some of the offenders at the local prison. Its great place with good food and as the weather was sunny we sat outside overlooking a great view of the city. The sun shining on my face felt AMAZING!

I hope my readers have also managed to do something this weekend that makes them happy....I would love to hear what it was :-) x

Clare's little tips :-)

So I just wanted to share some things that have helped me, little adaptations for when I am having a bad day with symptoms and things that have just made life a bit easier.

I am no expert so this is purely what has worked for me.........

First and foremost, the best thing I have ever bought is my Nook E-Reader.
I have always loved reading but once I got ill it was such a chore and drain on my energy to keep traipsing to the library to renew my books, and that trip to the library had to be factored in to my weekend and ate into time I could be doing something more enjoyable. So, in the January sale I took the doubtful plunge into the world of e-readers and I am totally converted. At the touch of a button I can access so many books, magazines and newspapers. I now read more than ever and it fills the time on those days I am stuck in bed or laying on the sofa aching.

Another thing I did was to get a TV and DVD player for my bedroom so that when I am in discomfort or really tired after work I can relax in bed and still watch my favorite programmes and films.

Another adaptation I made was to start doing my grocery shopping online. It is again saving my time and energy for something I would rather be doing.

Its all about finding little things to make life that bit easier.

I would be interested to hear from readers of my blog with any hints and tips for things they have done to preserve energy and free up precious time.

A good week

Yesssss!

Ahhh it makes all the difference to have a week like I have had...feeling well, feeling alert, not too tired and generally more 'me'.

I have managed to work 7hrs and 15 mins Monday to Friday and even managed a short walk on Tuesday evening. A couple of months ago this would have been unthinkable.

Today I have done my house chores and done a bit of shopping and had my hair cut.

Just normal things, but to someone with CFS all this is massive progress and gives me a great boost. I recognise there may be weeks that are not so good, but I savour the times like I have had this week and use them to harness positivity for the week ahead.

Have a great weekend readers and fellow bloggers x

The lonely place

The main thing I have struggled with since I got ill is how others have treated me or reacted to my illness.

Now. I've never been the most popular girl but always felt quite happy with my life and my friendships that I had built. Until I got sick and could no longer drive around visiting people...........

The most hurtful thing has been those who I thought were pretty good friends who have not once been to visit me in 8 months nor text or call to see how I am or simply have a chat.
It hurts....it really hurts....like a plug was suddenly pulled on quite a few of my friendships and I couldn't, and still cant figure out quite what I've done or not done to have warranted this. As I said to a friend at the weekend 'I cant actually believe this has happened to me'.

I can only assume that perhaps where I thought people were friends, they were more 'acquaintances' or perhaps they have things going on their own life which meant they felt they couldn't cope with a friend who was ill.

Thankfully I seem to still have some good friends who do call me, do pop over to see me or make plans with me and for that I am truly grateful. I am learning to think positive thoughts and be grateful for the good times and the kind people in my life.

As the evenings get lighter my goal is rather than laying on the sofa after work watching tv, once or twice a week to go for a short walk around the area I live in. This will give me not only health benefits but something else to occupy my time.

My circle may have got smaller but hopefully it has gotten stronger.

Starting off...

Hi, I am Clare and 8 months ago, after constant flu like symptoms and exhaustion for over a year, I was finally diagnosed with Chronic Fatigue Syndrome/ME.

My life as I knew it was blown apart and I have had to pick myself up bit by bit and try and find a way to be me again. Its going to be a long journey.

After a bit of a cry round a friends at the weekend I decided, after a couple of months of deliberating to set up a blog, to write down my thoughts, feelings and experiences, to try and help myself, but also to hopefully help others in a similar situation to maybe not feel so alone and scared as I have done. 

For those not familiar with CFS, it is not only the feeling of exhaustion and never feeling refreshed, but cognitive issues occur like poor concentration and memory. And yes...I can confirm my memory is terrible! 

In 8 months I have progressed, going from being off work for a time and being able to do nothing except the daily functions of living, to now being able to work 7 hours a day Mon-Fri and do occasional social things during the day at weekends. Evenings I haven't cracked as yet...but it will come.....I try and remain as positive as possible although some days do succumb to that feeling of despair I frequently felt in the early days. I still have set backs and days where I just need to stay in bed and rest, but I have been assured by specialists that the only way is up for me now, I just have to persevere. 

I am one of the lucky ones as I have made good progress and some sufferers are bed-bound or confined to a wheelchair. I am so thankful I am not in this position. 

I am learning to pace myself, what I can and cant do, and hope to share my progress and feelings with you all. Even if no-one reads this, I feel it will be quite cathartic for me

xx