Tag Archive | Chronic Fatigue Syndrome

Hello world!

Dear all-what an amazingly busy and fun month I have had and all the time I have been very mindful of over exerting myself to avoid being the victim of fatigue. Apologies that my blog has been one of the things to suffer but I had to be ruthless in my choices. It was  nothing personal but there are just not enough hours in the day to do everything I want to and coincidentally this is starting to get on my nerves. I spend too much time doing things I don’t enjoy so it’s time for a rethink.

In the meantime I can tell you that in the month I have been absent from this forum I have met the amazing and inspiring Simon Weston at a London Disability Confident conference, my colleague Richard and I are in the process of setting up a Midlands Employer Disability Network and I have had the privilege of seeing my niece Pippa married to Dan in a beautiful ceremony surrounded by family and friends. More about these in a separate post.

My son Will has been to Iceland and back and even saw the Northern Lights out of season which is amazing. I don’t think he realises how lucky he is but that will come with age and experience!

Further posts will come shortly but in the meantime I hope you all had a Happy Easter- back soon.

 

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.

Breakfast for supper

Breakfast Like A King copy

I need to lose weight. That’s a fact and after a year of almost total physical sloth I have gained more unwelcome padding. Doc Fraser is concerned about the weight gain because the more I weigh, the harder I have to work to lug myself around and this inevitably adds to the fatigue. You only have to try to carry a few kilos of potatoes across the car-park to know that carrying extra weight is hard work. The blubber has to go.

The problem with chronic fatigue syndrome is that you need to pace yourself carefully and to start with any exercise has to be gentle and low-impact.

“Delayed post-exertion malaise” is a common feature of chronic fatigue and is something I have suffered from for many years. When I feel good, I go into denial and exercise as “normal” but I am clearly a very slow learner or I am missing the Pavlov-Dog gene as I overlook the connection of overdoing activity with my crashes. This leads to prolonged periods when I am unable to do any form of exercise as I am exhausted, tearful, often bed-bound and severely depressed.

My new approach therefore is to lose weight primarily through healthy eating, moderating portion size and gentle exercise to help shift those stubborn pounds. Patience has never been my strongest feature but I am determined to be patient and not get disheartened if the weight comes off in pounds and halves. I will keep going, slowly but surely so that I develop a different lifestyle rather than adopt a short-term approach for a particular event. They say it takes about 66 days to form a habit so I will return to this post on 7 March to give you an update!

lose half a pound a week

In the meantime, my working and travel schedule is not conducive to a 3-meal-a-day regime and I am adapting my eating habits to fit in with healthy eating guidance and my long days. This week I am trying to follow the adage, “Breakfast like a King, lunch like a Prince and dinner like a pauper” so that instead of eating fruit for breakfast, I swap my meals around so that I have “breakfast” for dinner and eat my fruit on the train home. This serves two purposes as it means I eat only a snack in the evening, and furthermore, I am eating much earlier than if I wait until I get home at 8pm.

This will also help me with my insomnia as eating a large meal late at night can cause a sugar-surge a few hours later closely followed by a sugar-drop, which will not only wake me up, but also keep me awake.

Today, trying to swap some carbs for extra protein I stuck to scrambled eggs for breakfast, baked potato, baked beans and salad for lunch and fruit for my evening snack. I have to say that I don’t feel hungry so maybe this will work for me. it looks like this will work for me!

It took too long

I have had a history of clinical depression for 33 years. Symptoms of my depressive episodes, apart from the huge dip in mood, include severe fatigue, alternating between insomnia (unable to sleep) and hypersomnia (sleeping too much), and changes in eating habits. Focus and concentration are reduced to zero and  I become tearful, irritable and often suicidal. All common symptoms of depression.

My psychologist, who has known me now for over 20 years, was the first person to analyse my symptoms and their recurrence, recognising a pattern of high levels of activity/stress (good and bad) followed by post-exertional malaise. In other words, when I felt well I worked my butt off, and then suffered the consequences when I was laid low by total exhaustion, mental and physical.

ME/chronic fatigue syndrome was his diagnosis. This was backed up my by GP and medical history so that now it all makes sense.

I can’t believe however that I have so many symptoms common to CFS sufferers that it remained misdiagnosed for so long but then not many Doctors/physicians/GPs want to diagnose ME/CFS as it is clearly a difficult and controversial decision to make with no apparent “cure” to offer the unlucky patient.

Looking at my medical history I have a number of ailments/illnesses which are common to ME/CFS sufferers. They include;

Asthma-first attack aged 3

Hay fever (so severe that I had to have steroid injections to stem the symptoms and have just finished a 3-year course of immunology injections to relieve the symptoms permanently)

EPV-Glandular fever after repeated bouts of tonsilitis. Tonsils were finally removed when I was 22 years old.

Rubella (German Measles)

Chickenpox x 2

Shingles (Cocksackie virus) twice-first attack aged 12

Allergies and food intolerance

Repeated bladder infections operation required

Yeast infections-Candida

This is to name but a few of those I can remember. It is strange to think now that the physical and mental/emotional symptoms were treated separately and that certain connections were not made. Perhaps we need a more sophisticated computer system within the NHS which can analyse symptoms and make the connections for GPs to consider? Is this possible?

I’m not sure but if those connections had been made earlier I would have managed my health much more effectively and I would have had choices. Choices, in any walk of life, are a luxury and I would have welcomed them with open arms. To have a choice is to have control. I would have liked the option to control my illness a long time ago and maybe I would be more content with my reduced activity levels now.

Too tired

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.

I have the power

At my latest session with Doc Fraser on Thursday we somehow got on to the subject of habits. Actually, I know very well how we reached this topic. It is a perennial favourite of ours which is unsurprising considering how many bad habits I have developed over the years.

I treat myself badly. I am slavishly self-critical in all aspects and I don’t expect anyone else to treat me any differently. I actively wait for the criticism to come and am completely caught off-guard if it doesn’t. So, my homework over the coming few weeks is to focus on developing good habits which replace the bad ones.

By using the “Red Flag” technique, every time I recognise a trigger for these bad habits to kick-in I have to wave a virtual “Red Flag” and change those negative, unhelpful thoughts into more positive and realistic ones. Effectively I am back to changing ANTs into ARTs…..which translate as Automatic Negative Thoughts into Automatic Realistic Thoughts. That’s not to say that everything in the garden becomes rosy overnight because that’s not realistic. Positive thinking isn’t about fairy tales or rainbows or pretending that everything is ok. It’s about being realistic, resilient and managing whatever life brings you more effectively.

Bad habits use a lot of energy which I can ill-afford to waste so I will try to concentrate on forming lots of new ones.

Helpful

      Alternative

    Behaviour

      Influencing

   Thoughts.

The good news is that I have the power to do so. If I have the power to form bad habits, I have the power to exchange them for good habits 🙂

I_Have_The_Power

A “Thank you” is always welcome

A couple of weeks ago I spoke at the first Disability Confident Conference which was held in Birmingham. My summary of the day is covered in my previous post “Are you disability Confident?” and you can see from the photos how excited I was to participate.

Yesterday I received a “Thank you” from Mike Penning MP, the Minister of State for Disabled People and I was impressed that he had taken the time to make it a very personal one.

Not only am I disability confident, I’m also confident that Mr Penning is the right man for the job.

1469912_10151864557903823_504594780_n

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!

Support when it’s needed

How lucky am I?

After a weekend of enforced R&R (rest & recuperation) I returned to work today to face another week of impending deadlines. I actually thrive on deadlines but physically, I now find that any kind of stress is difficult to deal with either consciously or sub-consciously. This can lead to a relapse (or “crash”) as it did at the weekend.

I had lunch with my Senior Manager and explained what had happened. His first reaction was how could he/the team help during our busiest time of the year knowing that I am unable to do overtime or work at weekends as I have done in the past. In fact, one year I ended up leading a project and worked 98 hour weeks (not good in the long term as I was very ill).

I had a few ideas and we talked it through. This sounds easy enough but it represents a real watershed in my accepting this illness and accepting that I can ask for help when I need it. I am not used to this. I am used to being the strong one, finishing my work ahead of schedule and helping others finish theirs so conceding that someone else can help me with my responsibilities is alien territory.

I don’t like asking for help but when I thought about it, I feel more a part of a team by doing so. I would help others, and not accepting help myself seems rather churlish and stand-offish. We are a team. We help each other and I will be eternally grateful for this support. It feels strange but in many ways it feels right. I trust my team to help and I hope they respect the reasons why it is necessary this year. 

Of course I hope that this time next year I will be able to fully support myself and my workload, but until such time I will accept help graciously and keep buying tins of chocolates to keep us all going!

Thank you to all the IES team!

Quality Street

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.