I can’t believe that my last post was 3rd January. Where have those (almost) two months gone?
ActuallyI can tell you- January is my busiest month at work as a tax return reviewer. The UK tax return deadline is 31 January, and whilst many people say they will send us their information earlier, they never do so a large proportion get prepared, reviewed and submitted to good old HMRC in January. In fact, this year I was on “Midnight Duty” on Saturday 31 January and was still sorting out problems at 11.55pm!
So that was January. The first two weeks of February were spent tidying up loose ends before I started my 4-month break from work lasting until 8th June. A total of 114 days of freedom.
This is day 12 of aforementioned 114 and I am just starting to come round from a very busy period at work. I am on an annualised hours contract which, in simple terms, means that I work my butt off for 8 months during the busy time of the year, then have 4 months off during the quiet time. This works for the business and it sure works for me as it gives me an opportunity to recover my equilibrium and really relax properly for the first time ever in my working career. For someone who has periodic bouts of depression exacerbated by fatigue, this is an amazing arrangement and it’s a long time since I have felt so well mentally.
So far I have spent my time relaxing and being creative which is my natural bent but which I have to suppress during busy times as I just don’t have the time to indulge my inclinations. More about this in a later post.
In the meantime I am feeling much more communicative now that I have rested my brain and hope that I can resurrect my blog for at least the remainder of my “leave.”
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.
My oasis of calm is definitely when I am making and creating.
I find myself looking round the shops and instead of thinking ” I like that, I’ll buy one” I think, “Mmmm, I like that, how do I make one?”
That’s fine from an expense point of view but I am fast running out of space in the house and garage.
My latest addition to my furniture barn is a very heavy, low wooden table I bought for just £5 from a charity shop. It was so heavy I struggled to carry it back to my car but the effort was worth it (I think)
Painted with Annie Sloan chalk paint in French Linen (grey) and Old White, I then used a stencil to finish it off. This is the fist time I have stencilled a piece of furniture but it won’t be the last!
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.
There is a very good reason Chronic Fatigue Syndrome is labelled as chronic. That’s because it is unceasing and relentless in its vicious and pervading attack on your physical and mental wellbeing. It is ever-present, long-lasting and, even if you are lucky enough to get a remission, it usually returns. With a vengeance. It is unwelcome and, like a bad penny, it keeps turning up despite your best attempts to fend it off.
If my fatigue and related symptoms were just a flash-in-the-pan, over and done with in a jiffy leaving me to return to normal energy levels within a few weeks or months it would be called Acute Fatigue Syndrome. But it’s not.
This time of year is particularly difficult for many people I’m sure with invitations to Christmas parties, meals out and shopping trips dripping from the calendar but if you are like me, you really don’t have the energy to spare on these “optional extras.”
The extra energy required to cope with overcrowded public transport and supermarkets, busy roads, presents to buy, cards to send and people to see is just too much and I therefore have to bow to my enforced lethargy and say “No, thanks”. It can be seen as Bah! Humbug, but so be it. The most frustrating aspect for me however is the assumption that after months of being “in recovery” I should be “better” now and able to join in the merriment along with everyone else.
Sadly, this is not the case and my “recovery” will continue for many months and years. There is no quick remedy for CFS. It is an illness that must be managed constantly if a relapse or crash is to be avoided. Most people don’t understand this and look at you as if you have turned into a Couch Potato by choice. I can’t imagine anything worse and the frustration that being so inactive brings cannot be described. I could get really angry about it but that would waste yet more precious energy so I try to accept my new limitations with good grace. This has never been a strong point of mine so I am on a steep learning curve.
All I want this Christmas is to step aside from extra activity and stress, to avoid being out of routine and being late to bed and to spend the few days that I have off work with my family and not tucked up in bed exhausted by the build-up of extra effort.
So if I say “No thanks” to the department Christmas outing, the office Christmas meal, drinks on the last day before the holiday and anything else in-between, please don’t think I am unwilling, uncaring, selfish, lazy or unsociable.
I’m just too tired-really.
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.
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.”
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!
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.
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.
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.
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.
After a pretty traumatic and stressful first 2 days back at work, yesterday and today have been marked more by my extreme fatigue, fragility and lack of focus and concentration.
I managed to get through the day yesterday, but then promptly fell asleep on the sofa between 5.30pm and 8pm and woke up to find hubby returned from work and eating a sandwich instead of the dinner I had promised to cook!
I still had an early night and was still tired when I woke up this morning. Fatigue is horrible as energy levels are low and concentration levels even worse. I can’t wait until the weekend when I can have a proper rest and hopefully build up some resilience ready for next week. It has to be steady progress rather than trying to rush the recovery but I am so depleted that I have to accept this and I carry on plodding on, slow but sure.