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114 Days of freedom-days 8-12 catch-up

I am hopeless.

All my good intentions of keeping my Blog/journal up to date thwarted by …….by….. Mmmmm. Not sure, except that I have neglected my duties for 5 days.

intentions

In my defense, Days 8 and 9 were spent celebrating my birthday 🙂 Whilst I am not a fan of Christmas, Easter and other Public holidays when I am celebrating something totally unconnected with me, my birthday is sacrosanct. I have never worked on my birthday. Ever. I have always loved my birthday and  the work thing came about in my penultimate year at school when I sent off for retail management opportunity information from our best-loved high-street stores. Strangely, it was the Woolworths scheme which caught my eye.

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In addition to the standard holiday allocation, they gave you a day off for your birthday! Wow! That really appealed to me, and I vowed then and there, never to work on my birthday. I never have and my well-trained secretary used to book my birthday off as her first job each New Year. I think that Woolworths were years ahead of their time with my employer ony following their blazed trail 35 years later by introducing “Birthday Leave” in 2014. It may not seem much, but it meant a lot to me; Better late than never.

My birthday this year fell on a Saturday. I went to my Slimming World class as usual and the class sang “Happy Birthday” when they found out I was in group on my day. I didn’t want to do anything special on my birthday except that I got to choose the dinner menu. Steak of course! Not only do my hubby and I enjoy a good steak, Jasper has developed a liking for it too. The good thing is that today, steak is not the expensive luxury it used to be, and Jasper gets his own slab of red meat to eat with his mummy and daddy. Yes, we spoil him but he deserves it. He gives us both so much pleasure that we cannot possibly deny him a bit of sirloin.

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Jasper also likes going to the pub. He likes it because he gets lots of adoring attention and he meets his doggy friends for a get-together!

Jasper and Tess

Birthday celebrations over, I have mostly been busy making the quilts I have “on order.”

If someone wants a quilt, I am happy to make one if they choose their colour scheme. It’s very interesting to see who chooses which colours. Everyone is so different.

I currently have 4 quilts in progress.

  1. Will’s housemate (a) yellow/green/spring-like colours
  2. Will’s housemate (b) teal/grey/silver
  3. Feri’s mum in Iran- Moda Modern Neutrals
  4. My Slimming World Leader- lap quilt in random FQs

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Whilst looking at quilts on Pinterest, I have also found details for “Fidget Quilts.”

I will explain these another day. 🙂

Streetlife:-

About 12 months ago, I discovered a great website called “Streetlife” Streetlife is a social network website which “makes it easy to connect with local people, ask questions about your area, share news, events and recommendations with neighbours”

So far I have found a great local tiler, who did our kitchen tiles before Christmas, found free horse manure for our garden and this week, found a group of ladies who are interested in walking. Today we met for the first time in the local park and went for a walk along the canal. It was a beautiful sunny spring day and we have a lovely time. It was so successful that we will meet again next week for a walk in the fresh air and sunshine (hopefully). People bemoan the internet but I love it. It has provided some great friends and wonderful inspiration and ideas apart from being able to keep in touch with family. How did we ever do without it?

So, a quick run-down of the last few days. I am trying to keep up with myself. Now I am beginning to understand how my mum felt-she always said she always felt like she was living in the middle of a whirl-wind. If I can’t keep up with myself, I can’t possibly expect anyone else to.

Stay with me!

 

 

 

 

 

 

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114 Days of freedom-day 7

Already one week down on my 16-week break from work! How quickly time flies when you are enjoying yourself so the saying goes.

I certainly enjoy having the time to indulge my favourite activities; walking Jasper, making quilts and, at the moment, sleeping.

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Jasper heping with mummy’s quilt!

One thing I have learned about chronic fatigue and how it affects me is that my body is not very good at dealing with adrenalin. It doesn’t matter whether the adrenalin -rush is the result of stress or excitement, (a) I seem to produce a lot of it and (b) it hangs around and upsets my equilibrium for some weeks afterwards.

I finished the high-intensity cycle of my seasonal work at the end of January, and am still winding down 3 weeks later. In previous years when I was much less self-aware, I would have fed off this adrenalin and continued the high-energy activities it promotes. This in turn would lead to a crash weeks if not months down the line. These days, being aware of this potential reaction I make a concerted effort to relax and not do  more than necessary so conserving my energy and protecting my equilibrium.

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The beginnings of a disappearing 16 square quilt

Since finishing work, I have been able to control what I do during the day, but my sleep pattern has been disturbed. Short periods of deep sleep for 2-3 hours are followed by hours of agitated waking, my mind racing with ideas and plans for the next day.

Going forward if my sleep doesn’t settle down soon, I will take my prescription medication to help me stay asleep for a good 6-7 hours instead of waking every few. In the meantime, I just keep trying to rest and relax in the hope that sleep returns to normal. My GP tells me that sleep patterns are the last thing to sette down after a relapse so hopefully it won’t take long.

Still mind

The Spoon Theory

The Spoon Theory

When I read this article this morning I cried. Not because I was sad or upset but with relief because I may have found a way to describe how I feel to someone who looks at me and thinks I look OK. Someone who thinks that all my moans and groans about being tired, exhausted, and wiped out to the point of collapse and tears of frustration and pain are fiction. That’s the problem with an invisible illness. You look fine but underneath you are fighting to stay as normal as possible with every ounce of energy you have. If I could only find a way to explain that feeling, I would feel better. People would maybe understand and not judge. A little empathy and genuine concern costs nothing but you would think it costs the earth for its paucity.

I face any number of battles every morning before I go out of the house. I often use all my spoons before I get to work, and then I’m in deficit; running on empty whilst all the time destroying my engine. You can run on empty for a while. We all know that there is always something in reserve from what the car manufacturers tell you. Unfortunately when your body says enough is enough it’s usually time to wave the white flag and retire to bed for a while. Rest and recovery is vital in managing chronic fatigue syndrome and I spend most of my weekends in bed, either resting or asleep, just catching up from the week’s exertion. What a waste of time.

I hope that you will read about the Spoon Theory and imagine how it would impact you and your daily routine. It is the closest explanation I have seen for normally healthy people to start to understand what it is like to have depleted energy resources and reserves. I used to take my high energy for granted; Sport, competition, manic activity and multi-tasking were key skills of mine and I thrived on it. Now, I have to manage my energy supply. I only have so many spoons.

 

The Hare and the Tortoise

It’s amazing what 5 days away from work and my 4-hours-a-day travel routine can do to my energy and stress levels. I haven’t had 5 days away from work since last August and having worked through Christmas and a very busy January, just 5 days away from the constant demands of deadlines and train timetables has paid dividends.

I feel rested and much more in control of my emotions. I am less short-tempered and more amenable. I can  deal with change in a measured manner and I don’t feel that I’m “on the edge” and about to explode constantly. I carry much less tension in my neck and shoulders and my sleep is better.

I love my job, and I thrive on the energy and variety of work but I can’t help the way that my mind and body react to stress. As I have often said before, stress is not necessarily negative. Stress can often be positive and provides the necessary energy and creativity to get the job done both on time and done well.

If I had to describe to chronic fatigue syndrome in one word it would be “frustrating”. From the symptoms to the manner in which I have to mange this illness it is nothing short of frustrating. I still haven’t come to terms with my limitations but I am learning how to manage my illness much better. I know I have to rest more, to relax more and not to be too hard on myself when I don’t accomplish what I set out to achieve. It’s slow progress but it’s still progress.

Looking forward to the next 2-4 months I have a very busy and exciting schedule with lots of amazing things to look forward to. I am trying to keep a lid on my excitement as this wastes precious energy and whilst it’s “not the real me” as I usually wear my heart on my sleeve, it has to be the “new” me if I am to retain my equilibrium and improved mood.

When I was young I loved Aesop’s Fables and my favourite tale was about the  race between the Hare & the Tortoise. Looking back, I think that the hare was afflicted by CFS as he had a spurt of energy to initially overtake the tortoise but had to take a nap halfway through the race as he had run out of energy. This allowed the slow and steady tortoise to take the victory. It’s classic CFS!

So the moral of my story is, train yourself to be a tortoise and leave the high-energy-sapping activities to someone else.

Brain fog……

is so frustrating. One of my major symptoms of chronic fatigue/depression at the moment is brain fog. This has to be one of the most frustrating manifestations of my illness for me and it’s taking me a while to come to terms with it. Needless to say I won’t be applying for Mastermind or University Challenge any time soon.

Usually, I can recall information very quickly and at a drop of a hat. These days when asked a question, I realise that I know the answer and it is there “somewhere” but where and how long will it take to retrieve is unpredictable at the very least and bloody annoying every time. It could take hours for me to remember a name.

This must sound rather spoilt and insensitive to anyone who is struggling with far worse symptoms than mine, and I appreciate and understand that, but for me, my intellectual ability and agility has always taken precedent over financial success and monetary advantage so that if I am unable to function in accordance with my expectations, I have failed.

This is what I have to live with and moderate. Difficult as it is, I have to realise that if I can’t answer a question on University Challenge before one of the contestants, and have to search through my contacts to ascertain the name of the person I’m thinking of, then so be it. Grrr….I don’t like it and as the BUPA Dr told me 9 years ago ” you will have trouble growing old unless you moderate your expectations”……

Mmmmmm…I sort of get what she meant but I am not giving up just yet.

I have too much to give and too much to pass on to my successors to worry about slow performance. “

“It’s not how you start it’s how you finish” so the lyric goes and it’s absolutely right.

Keep going; keep challenging; keep on track; you will get there.

50 Shades of Women

Yesterday I was lucky enough to attend the pilot presentation entitled the “50 Shades of Women” put on jointly by Kate Nash Associates and EDIT Development. The workshop is “designed for disabled women from all backgrounds, ages and stages of their lives and designed specifically for women in management grades.”

The overarching goal is to help disabled women “deliver work more effectively as disabled women” and we can expect to :

  • “….overcome self-limiting beliefs and behaviours…”
  • “…start to find new solutions to old problems”
  • “Gain some insight into our strengths and development areas in the workplace…..” and
  • have some practical ideas to start using immediately”

The workshop was amazing and I came away inspired, motivated, hopeful, happy in my skin and thrilled to have met 30 women who I can add to my “tribe.” We all related to each others stories and health conditions and disabilities. We supported each other and we understood exactly what makes us tick. To be in an environment like that it a privilege and an occasion to celebrate. The positivity has stayed with me all day and nothing could have spoilt what was shaping up to be a typical 9-5 work experience.

I took time to share some of my experiences with a colleague at work, with whom I collaborate on disabled matters, and it cheered him up too! There’s nothing like a bit of positive encouragement and acknowledgement that although we have our additional “difficulties”, this should be no barrier to FABULOUSNESS.

In many ways I had let myself forget what I am good at; what I enjoy and actually, what I am excellent at. Although my perception of me is somewhat tempered by self-criticism and doubt, the feedback I get from others is overwhelmingly the opposite and I am, apparently, an amazing role model and inspirational person. Hey, I need to develop this idea and start to believe it otherwise I could lose the opportunity to help others overcome their barriers and fulfill their potential. Nothing would make me more fulfilled than taking on that role.

Of course I have a day job which I love. I need to find a way to combine the two without jeopardising my mental health. This will be challenging but as I discovered yesterday, far from impossible.

I learned so much yesterday that I cannot possible share it all in one post, but share it I will over a number of articles. For today, have faith and believe that you can achieve, you can be an equal and certainly the world is starting to take a more positive approach to people with mental health conditions.

We know that we are just as capable, loyal, creative, determined, resilient and have a lot to give. Thankfully at last I see others believing that too!