Tag Archive | M.E

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.

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Available energy

Ra! Ra! as the posh people say.

Today I had energy enough to avoid working the afternoon through a brain=gof (oops! that should be brain-fog so perhaps I spoke too soon) and fall into bed as soon as I got in the door. This makes a pleasant change and one which I appreciate and certainly don’t take for granted.

brain-fog (1)

Without realising it at the time, last week was very stressful for me. And here is where I get frustrated most. I have worked in a tax team for more years than I care to mention and I have taken necessary tasks like billing clients, people management (appraisals and goal-setting), management meetings, and doing my day-job in my stride. So why now do I, subconsciously, find it all so difficult to cope with when they all come along at once? It’s stress Caroline but not as you know it.

One of my strengths has always been my ruthless organisation and multi-tasking skills. I have always played these down as being normal attributes for someone in my position, but I am realising now that actually, I was pretty good at this. Sadly now however I am Mrs Average. I haven’t lost the skill, I’m pretty sure that it still lurks within me, but at the moment it is impaired by the lack of energy, poor concentration and focus, and ability to separate the necessary from the “nice-to-have.”

MarianneSteene_MultiTasking (1)

I am determined to see this through and come to some sort of compromise whereby I can fulfill my potential without crippling myself with fatigue in the process. I must be a slow learner on this score which is why I am so reliant on Doc Fraser keeping me on the straight and narrow. I am so lucky to have access to Doc Fraser’s vast knowledge and experience in advising those with ME and chronic fatigue syndrome and he is full of suggestions and practical solutions to help me recover.

My next appointment with him is tomorrow and I am looking forward to sitting down for 40 minutes with someone who listens, understands and provides the necessary advice in the nicest way possible. (It’s not everyone who can ask me to lose weight without incurring an indignant response!)

I should keep an energy diary. By keeping a mood diary I was able to identify patterns in mood-changes and reasons for them so perhaps I can do the same for energy highs and lows. Mmmm….I saw a lovely 2014 diary in Paperchase which would be ideal.

There are always compensations!

Don’t fight it

Everything I have read about CFS/M.E includes the advice “don’t fight the fatigue.” That’s assuming you have a choice.

This weekend, I had no choice, and I have spent many many hours in bed asleep or just too exhausted to move. It’s a while since I felt this lifeless but looking back over the last few weeks, I suspect this is a classic case of delayed fatigue after some exciting and stressful events and increasing pressure at work during our busy time of year.

To summarise, I had 11 hours of sleep on Friday night. I followed this with a 4-hour “power-nap” on Saturday afternoon, 14 hours sleep last night and 3 hours of “rest” today. I have no desire to do any craft work, to cut pieces of material ready for my daily commute quilt or even read a book. I am totally drained and my mood has plummeted. I wish I knew what really causes these relapses as I have been trying really hard to avoid over-stretching myself apparently to no avail.

Luckily I see Doc Fraser on Thursday and will be able to chat over the last few weeks with him and try to get back on track to recovery. Perhaps this is a one-off strong reaction; perhaps I still have the cough/sore throat virus lingering longer and outstaying its welcome. Whatever it is I don’t like it so in addition to increasing my rest periods, I will be a lot more diligent about eating more healthily and avoiding unnecessary activity and sadly this will have to include the Christmas parties. I can’t stay out late in town worrying about catching the last train home and still turn up for work early next morning. It’s too much when it takes me 4 hours a day to travel to and from work.

Alcohol is not conducive to recovery from CFS/M.E and it’s no fun being out with a crowd who are gradually getting merrier when you are the only sober one there!

So I will continue with my normal daily routine up to Christmas and into the New Year. I have some wonderful things to look forward to in 2014 and I want to be in the best health I can be to enjoy them.

Making rainbows

Hand-sewn triangle quilt

Hand-sewn triangle quilt

I have a new quilt in progress, but this time I am sewing it by hand rather than use my sewing machine.

This has turned out to be a good idea as I can do bits and bobs during my daily commute to work on the train, and over the last few days when I have been confined to bed with a nasty sore throat and sinus infection, I have been able to pick it up for short intervals.

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Coming together triangles and hexies

I am still experimenting with simple patterns and shapes before deciding which more detailed project to do next. As well as doing this quilt by hand, I also have my next machine-quilt material in the form of a Moda Jellyroll, ready to put together when I feel better.

This is PB&J by BasicGrey for Moda Fabrics and I can’t wait to get going on sewing the strips together.

PB&J by BasicGrey by

PB&J by BasicGrey by Moda

Crafting, including quilting, is a great hobby to have for anyone who is restricted in the level of activity they can do. Before my M.E/CFS diagnosis I would spend most of my free time forcing myself to be active; swimming, golf, heavy gardening anything physical that I could manage. I would wonder then why I ended up totally exhausted.

These days, I have different hobbies. Thankfully my 18 year old son now has his own circle of friends he can play sports with, leaving me to focus on more gentle interests. I do miss the activity.I hate being so restricted and having to turn down team-building social events after work because it means late nights. I hate having to weigh up the pros and cons of doing any activity before I make a decision but there are compensations.

My wonderful friend Colleen who has early-onset Parkinson’s Disease has a fantastic approach to dealing with her illness. For every activity she finds herself unable to do anymore as a result of the PD, she finds something else she can do. As a result she”fills the gaps” and learns lots of new skills as a result. Good on Colleen and I’m learning to adopt her approach.

Whilst my golf clubs are gathering dust in the garage and my garden is not as immaculate as I would like, I now have a new quilt on my bed, my niece’s wedding scrapbook part completed, a handmade card for any occasion and a material stash that anyone would be proud of. I love colour and apart from my garden in full bloom, nothing provides such vivid and varied colour like a craft stash!

It’s like living with a rainbow everyday.

Liebster award

A big “THANK YOU” to Megan’s Miscellaneous Menagerie for nominating me for the Liebster Award. It really made my day 🙂

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I will now answer the 10 questions that Megan has asked, and very good questions they are too!

  • Where would you live if you could live anywhere in the world?

I’m very happy where I live at the moment but given the choice I would have to take up dual-residence in Swanage, Dorset and Esfahan, Iran. We have had some amazing holidays in Swanage and it is a place I feel very close to. By the sea, unpretentious and beautiful in a natural way.

Esfahan, my husband’s home city is so beautiful and full of history and culture. I think I must have been a Persian in a previous life as I feel so very comfortable in the country and am perfectly at home with their customs and attitudes.

  • What is your favourite pet that you have ever owned? (that is cat, dog, horse etc.)

This is a difficult one to choose as I’ve had many pets and they are all lovely. I guess my two cats Tom and Tess are my favourites, especially Tom (close your ears Tess) as he stays with me, by my side, whenever I am poorly. He senses when I’m ill and looks after me.

  • How would you describe your fashion style?

Ha! ha! What’s fashion? At work, smart. At home, my son calls me a hippy! I love bright colours and funky shoes (I even tried to turn up to work in 1 red shoe and 1 purple shoe last week!). I guess if I had to describe it, “Young at Heart”!

  • Are you a spring, fall/autumn, winter or summer person? (that is which season do you prefer)

Apart from my flowers in the summer, I’m not great in the high season. I get very out of routine and agitated and love it when autumn comes around and everything settles down again. Born in February 1963, winter snow is always welcome and there’s nothing like yellow daffodils in the spring.

  • What is the one thing you wish you were good at that you currently struggle with?

Drumming!

  • Would you prefer to work, or go to school as a student?

Without doubt I would be a perpetual student. The first thing I would do if I came into some money is chose a University course and start over. That’s my dream. My son is looking to start University next year and I’m so jealous! I’d swap tomorrow.

  • What is one thing you haven’t tried that you would like to have a go at?

Driving a steam train.

  • If you had a million dollars to donate to a charity, which on would you choose?

Oooo, a difficult one but most likely a charity that supports young people with mental health conditions and M.E/ CFS get qualifications and into employment.

    1. If you were to open a business, what product or service would you offer?
    1. I would offer to go and talk to businesses and employers about employing more people with disabilities, especially mental health conditions.
  • What 3 things would you change in your local community if you were elected mayor?

Firstly I would make sure to open the old railway line between our village and Market Harborough for walkers and cyclists to travel safely. AdamSmile.

Secondly I would veto the building of any more houses within a 5 mile radius of our village.

Thirdly I would try and encourage someone to open a village shop!

The bloggers receiving this reward today are;

The Project: Me, by Judy-great inspiration and support always.

We Are One-by Ruth- My journey out of the darkness of depression. How I changed from not just surviving but thriving.

Roots To Blossom-I am living proof that you can in fact return from the point of no return.

My Fibrotastic Life– The journey of hidden blessings

Leanne is learning to Drum-It’s nice to know I’m not the only nutcase!

My ten questions for you all are these;

1) What is your greatest achievement or proudest moment and why?

2) What was your favourite subject at school and can you remember a particular lesson?

3) If you could have fresh flowers delivered every day, which would you chose?

4) If you could employ ONE of the following, which would you have? A chef, a massuer/euse, a chauffeur, a gardener or a personal shopper?

5) What is you favourite book or story?

6) What was the last song or piece of music you listed to?

7) What makes you laugh?

8) When and what was the last thing you did for YOU?

9) If you could do anything you want today, what would you do?

10) If you were an animal, what would you be?

Have fun!

Poppyposts

Poppyposts

Payback

christmas_2_cfs_chronic_fatigue_syndrome_card-rda17609b3c8444acb78573d11815bdbb_xvuak_8byvr_324I have had a mixed week of fortunes; It started off last weekend with feeling under-the-weather and spending most of my time resting. Sadly, I felt no better by Monday morning and had also developed a very sore and painful throat so I felt that the sensible thing to do would be to take 1 day off work to recover.

Tuesday I felt much, much better and trotted off to work as normal. I was fine all day and came home in a better frame of mind. Positive that I had done the right thing and headed off the germs before they really took hold.

Wednesday however I had a relapse and started to lose my voice. This was worrying as I was due to speak at the Disability Confident conference in Birmingham on Thursday, a huge privilege and something that my colleague Richard and I had been preparing for all week. I really didn’t want to miss this opportunity and let Richard down so I came home after work, had a whisky, lemon and honey hot toddy and went straight to bed knowing that I had to get up at 04.30am on Thursday.

After a great night’s sleep, I felt better and although my voice was still a little gruff it was intact so off I went ready to speak. With the help of some anaesthetic throat spray, I gave my speech at the conference and then spent lunchtime networking with the attendees. I had a few coughing fits which stopped me in my tracks for short periods but I was definitely on a high and thoroughly enjoying myself. I should have known that like “bad” stress, “good” stress can also lay me low and I need to control my energy and emotions better. “Emotional shocks” or new/novel situations when I am out of routine are all big triggers for me and I came home like a demented Tigger. It took me a while to calm down before I collapsed into bed.

During the night however I started to cough badly and was sick several times. This carried on into the morning so that whilst initially I felt able to work from home, it soon became clear that this was not an option. I had no choice but to take another day off work. You can’t focus on work whilst coughing continuously and being sick but I still felt anxious and guilty about staying away. This is the problem about being poorly. I really don’t like it. No one does but after such a great day yesterday it frustrates me that I can be laid so low so quickly. Maybe I was fighting off the worst of the symptoms earlier in the week with excitement and adrenalin and once the event was over, my body relented and the bugs took over in force. I am hoping that this is the case, as it is far preferable than thinking that yesterday directly caused the relapse.

Today has definitely been a “duvet” day. In bed, drinking tea and eating toast supplied by my attentive hubby and sleeping away a good part of the day away. I have done a little writing which has kept me occupied during the periods I was awake but I still have no voice. Hubby knows I have no voice but still keeps asking me questions. Old habits die hard but we are getting quite competent at our own version of sign language. It takes a lot to stop me talking as most people will attest to so this must be some kind of super bug. to lay me so low so quickly.

So, another weekend of rest and recuperation to “look forward” to 😦

It’s very frustrating but let’s hope that this is just a difficult period and that when recovered I will have a prolonged spell of being well.

chronic-fatigue-syndrome-cfids-cfs-me-mcs-awareness-the-positive-pear

Are you Disability Confident?

downloadYesterday I had the pleasure and privilege to give a short speech at the first Disability Confident regional Roadshow held at the KPMG Birmingham office.

The Government-backed Disability Confident campaign was launched by David Cameron in July when he told 300 business leaders that it is “time to dispel the myths about the complexities of employing disabled people” and there will now be a number of regional road shows leading up to the grand finale in London in March next year. These conferences are primarily for employers and designed to spread awareness about employing people with disabilities and health conditions encouraging them to be more Disability Confident.

It is a fantastic initiative, long overdue and, from what I saw yesterday, will be a great success.

The conference was compered brilliantly by Dawn Milman-Hurst from Equal Approach and the keynote speakers included Mike Penning MP, Minister of State for Disabled People and Sophie Christiansen, Paralympics triple gold medallist from London 2012 and one of my all-time favourite sportswomen. I was so excited to meet Sophie in person and she even let me hold her gold medal which she brought with her-amazing.

Me, Sophie and the London 2012  gold medal

Me, Sophie and the London 2012 gold medal

Me and the Minister

Me and the Minister

Following the initial introductions, my KPMG partner-in-crime Richard Day and I delivered our 5-minute speeches. Richard has a neurological condition which affects his walking and his focus was very much on the issues he encounters having a physical disability and the adjustments he has at work to help him deal with these.

I focussed on my depression and M.E both of which are fluctuating and most of the time, invisible, so that the audience got a flavour of the different problems and solutions affecting people with physical conditions and mental illness.

We were followed by Sophie Christiansen who gave a very inspiring speech covering her early childhood, how she first discovered her talent for horse riding, obtaining her First Class Honours degree (and Masters) in Maths and her London 2012 experience. Sophie is not just an inspiration for Disabled People, she is an inspiration and fantastic role model for everyone. Her tenacity, competitiveness and determination are obvious and every day she demonstrates that these qualities are key to her success.

The expert panel members (Dawn Milman-Hurst (Equal Approach), Kate Headley (Clear Company), Amanda Kirby University of Wales), Morgan Lobb (Diversity Jobs), John Beasley (DWP Access to work), John Keeble (DWF)and David Johnson (West Mids Fire Service) then fielded some interesting and thought-provoking questions from the audience.  They ran out of time after 45 minutes but could have continued for hours.

As I Am

The event concluded with a brilliant performance of “As I Am” by Oscar Bell and Jordan Statham.

http://www.youtube.com/watch?v=vHRtuiYUFrs

“As I Am is a song written by Oscar Bell and Jordan Statham. The song is about the struggle people with learning and physical difficulties endure every day. ‘As I Am’ embraces the possibilities that one day these people will be treated equally and noticed for the talents they have. The song has recently been used as the anthem for the Awareness of Autism campaign and has been played on numerous radio stations.”

The song is available on i-tunes and I would encourage everyone to buy a copy because it’s a great song and proceeds support a very worthwhile West Midlands Autism charity.

Go on! you know you want to!