Tag Archive | ME

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.

 

Brain Fog Day

out-of-order

Brain Fog is a common symptom of ME/ Chronic Fatigue Syndrome and it can strike with deadly effect out of the blue. It did. Today. To me.

I knew as soon as I came round this morning that I was in trouble. I sat up in bed and my head felt like a ball of cotton wool. Every time I moved my head, even slightly, I felt dizzy and disoriented. I couldn’t think what day it was.

It slowly dawned on me that today is Monday, a work day, and I needed to get ready. Driving through thick fog is hazardous and slow work. It can confuse a person very quickly and is claustrophobic. As I slowly drank a very welcome cup of tea I gathered my thoughts and calmed down.

Brain Fog causes me panic at first as it throws my routine into confusion and leaves me having to remember what Plan B is. It can also make you think that you are developing a degenerative disease such as dementia. I hope not, but I did come across a quote from a Doctor today which is mildly comforting; ” Brain Fog can cause you to forget where you left your keys. Dementia renders you unable to remember what the keys are for”.

So far, so good.

On days like this my Plan B looks something like this;

keep-calm-and-do-less-257x300

  • Stay calm and accept that today is going to be more difficult than usual.
  • Try not to put extra pressure on myself by trying to perform at normal levels.
  • Don’t make any important decisions or provide technical advice without getting a second opinion.
  • Stay close to home and as quiet and undisturbed as possible.
  • Continue with the day but slowly and surely. Just keep swimming even if it’s against the tide.
  • Be patient and kind to myself.
  • Ask for help if needed.

Brain Fog is exacerbated by noise, crowds, activity, stress, bright lights and stress. I couldn’t face taking 4 trains to work and back so I worked locally instead. This was a good move and after a relatively peaceful morning my head started to clear at around 3pm. I feel much better this evening and hopefully I will have a better nights sleep-something which is critical if Brain Fog is to be contained.

Brain Fog is debilitating and distressing but there is a lot I can do to help myself recover as quickly as I can so normal service can be resumed.

Tomorrow is another day.

brain power

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.

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.