Thursday, 28 July 2016

Concussion - a journey of ups and downs.

Some of my friends have noticed that it has been a long time since I last wrote a blog post. It may have seemed that this hobby was one of those that I had a go at and discarded when the going got tough. The going has been tough but I am still a blogger! My last 3 blogs have been reblogs of other people's work which I have found helpful and hoped may be of use to others. 

However, to write something original takes time and concentration and, above all, energy which I have not had. This has been due to the intensity and pace of my job.

I have looked back over my first few blog posts which now seem such a long time ago. It makes me smile to read this in my first blog 'My brain is healed now and I am starting to make plans and dream again'. I felt confident that I was now ready to face the world with energy and imagination. It has not been quite as simple as that...

The pace of work on my hospital ward has been increasing with changes in ways that the ward functions and reduced staffing levels. This increased cognitive demand has left me so drained that my days off have not been enough to restore my energy levels before I am back at work again. This has resulted in increased PCS (Post Concussion Syndrome) symptoms such as very loud tinnitus which makes it difficult to hear shift handovers without intense concentration, headaches on most of my days off, including the occasional fierce migraine, nausea, tearfulness.
Sunrise over the Hauraki Gulf seen from my ward staff room
So this is why it has been impossible to write on my days off. The washing up has piled up, the dust is thick enough to write your name in and sometimes it has just been too exhausting to get in the shower or get dressed. So writing a blog has been out of the question.

But, you may be asking, where have I found the energy to write today?

My secret is running!
This would appear to be something that uses energy but in my case it generates it, enabling me to do more on my days off and feel more connected with the life that the rest of the world seems to be living. I wrote in a previous blog about the isolating effect of concussion which is an ongoing problem because it is so difficult to maintain relationships when energy levels are so low that social interaction is out of the question.

I will write another time about running and the important place exercise has in my post concussion life but what I want to say here is that recovery from concussion is a journey of ups and downs. I feel, since a few weeks after my return to work in March, that I have had a time of 'downs'. The discovery that I can work in such a demanding environment has been amazing but the utter, utter exhaustion has been depressing and stolen my sense of having any kind of satisfying future to look forward to.

I have realised that the road to recovery is long and unpredictable. Plans are difficult to make because I don't know what I will be capable of in 6 months or a years time so it is often a matter of bringing life back to it's simplest state. Just putting one foot in front of the other until things start to make sense. I have not been frustrated. It has been more of a feeling of despair. Frustration has a certain strange energy to it. Despair is a sinking feeling of no control, no future, no end to this thing called PCS. 

I am starting to surface after this dark night of the soul and exercise has been the key for me. Your key may be different but whatever it is it will be something that feeds your soul in spite of the way life is making you feel.

I am starting to feel optimistic now. I have some energy, not a lot but enough, to tackle the mound of washing up (the dusting is another matter!). I am aware of small changes, improvements, in my performance at work and my staying power - I can endure cognitively demanding situations for longer. I have to remember when I first went back into the workplace, just to build tolerance to being there, I struggled to be in the staff room for 1 hour. This left me so wiped out I had to go home in a taxi and lie down for the rest of the day. Now I work four 8hour shifts, often leaving work an hour late. I have regular early starts which mean I have to get up at 5am so I often start work having only had 5 hours sleep. 

When we are struggling it helps to look back at how far we have come and to remember this is a journey of ups and downs which none of us know the end of as we put one foot in front of the other. It also helps to share this journey with others who understand which is why the Facebook Post Concussion Group page has been so helpful to me.

Friday, 24 June 2016

Helpful information for those working with or living with PCS/TBI survivors

For those who have been following my blog it is probably obvious that I haven't written anything for a while. This is because my return to work is still leaving me drained so my days off pass in a weary blur. However I am doing well when at work so there is progress. I hope to have some energy to write a blog soon. Meanwhile.....

Today I am posting a link from which clearly describes the hidden difficulties concussion affected people encounter when they are with others, either socially, at work, or with the family at home. It gives very helpful advice to enable friends, family and colleagues to understand the difficulties and give support and encouragement.  Here it is.....

Friday, 27 May 2016

'You Look Great' a wonderful video by Chris Byler and John C. Byler.

I've just watched an amazing video on the Post Concussion Syndrome Facebook Page which I would like to share with you.

This is the link below to the YouTube video, 'You Look Great', which is shared with permission from the creators.

The visuals at the opening of this video made my head spin a bit but, if you can bear with it, it is well worth watching the whole thing. It is a work of art! I hope you enjoy it as much as I did.

If you are interested in linking up with others from around the world who know what it is to have lives affected by concussion, this is the link to the very supportive and loving Facebook Concussion group that I joined recently.

Wednesday, 18 May 2016



This excellent description of the day to day struggles of those who are experiencing post concussion syndrome (P.C.S.) or mild traumatic brain injury (M.T.B.I.) is so good that I wanted to share it with my friends, family and blog readers. It validates my struggles and explains why simple things can feel so hard and how limiting it can be, socially, when brain energy has to be carefully rationed. It is written by therapist,

Mild brain injury is a real misnomer, as it conveys the idea that nothing much is a problem when quite the opposite is more often true. It is called “mild” because, in fact, the mildly brain injured can walk, talk, eat and dress independently, often times drive a car, shop cook, go to school, or even work.
What the term fails to account for is the inherent limits of how often, for how long (endurance), and the all-important, how consistently (e.g., every day, once a week) these activities can be performed. Even more elusive is the concept of how many of these daily activities can be done sequentially in a given day as is normal in the lives of people who are not brain injured.
The mildly brain injured cannot put back-to-back the normal activities of everyday living (dressing, eating, shopping, cooking), work (engaging in gainful employment by meeting deadlines, delivering a product for money, being present a requisite number of hours) and social life (eating with family or friends, participating in parties or holidays, going to movies, etc.). They cannot do all of this on any one day or in any one week. Many mildly brain injured have poorer hygiene than they did prior to injury because if they bathe and wash their hair, that may be all they can accomplish in a given day. So they often must trade off activities. Bathe on alternate days. Cook two days a week. If they engage in work, then someone else must be performing many or all of the other activities.
The mildly brain injured who live alone, but attend family and social functions, are often seen either as lazy (they don’t help out much before in the planning or after in the clean up), or if they do pull it together when in the company of others, they pay for it with severe fatigue, crashing for hours or days afterward. They fatigue they feel defies description, going far beyond and far deeper than anything a non-brain-injured person would consider profound exhaustion. It is extremely common for the mildly brain injuredto become overwhelmed in the attempt to organize a normal or routine life. Normal life is filled with unanticipated changes to the schedule. A routine life is never just so; it is filled with the need to do simultaneous functions, to operate on automatic while engaging the conscious mind in decision-making, planning ahead, responding to changes, and improvising with more than one person’s schedule in mind. The mildly brain injured go into meltdown when faced with normal and routine living. In fact, even when they can engage in a seemingly normal pace, it is frequently because they have not judged carefully enough how much energy they have in store, and the mildly brain injured with overload, crash and burn.
I have worked with clients with mild brain injury for many years. One of the most valuable lessons I have learned is simply to say “it’s time to take a break now,” when a client has been doing well, but starts for no particular reason to express meltdown. Meltdown is frequently not recognized until too late, not only by others, but also by the person experiencing it. Meltdown can be recognized by a shift or change in the outward behavior of the person’s seemingly normal responses. One client’s speech rate increases as she starts not to process those who are speaking to her. Another client breaks into tears for no apparent reason and can’t recall how to do simple mental functions he may have been doing (or organizing) just a moment before. Meltdowns frequently trigger the very real feelings of isolation and loss that come with brain injury that can, in turn, trigger depression.
Mildly brain injured clients who are fortunate enough to live with family or friends can be helped a great deal by timely cueing to conserve their energy. If many of the daily independence functions. which are serious energy eaters for the mildly brain injured, can be handled by others, then they can use their energy to really expand their social and work worlds. When energy does not have to be used just to stay afloat, then it can be used for other creative and productive work. However, in the mildly brain injured, the supply of energy is extremely reduced from whatever the individual was capable of prior to the injury.
Mild brain injury often is accompanied by pain. Frequently the pain and fatigue go hand in hand. But often they do not, further confounding the understanding of what system is working here—what is cause and what is effect? The pain is often felt or expressed as flu-like. Muscle and joint aches. Frequently the pain wanders between two or three loci (head, neck and lower back, for instance). Weather and pressure systems also seem to interact and cause difficulty. Pain and fatigue are often the baseline of what is felt as normal to the mildly brain injured. This is where the day starts—awakening with flu-like symptoms, and having the day go down from there with the press of many activities to do and so little time and energy to do them.
Additionally, rehabilitation and cognitive work help the mildly brain injured to stay focused on what they can do and how to organize and apportion their time and efforts. Psychological therapy helps them deal with the emotional devastation of losing the self they were prior to brain injury. Neurological help in the form of good diagnostic work-ups and supportive treatments can help to control the multiple physical symptoms: blood pressure problems, fatigue, pain, and sleep deprivation, to name a few common sequelae of brain injury. Alternative therapies such a chiropractic, acupuncture, homeopathy, Reiki, meditation, and yoga can be very valuable in treating symptoms and providing self-help and self-healing tools.
……Luann Jacobs

Sunday, 8 May 2016

Concussion: A recipe - eating well when too fatigued to be bothered.

My return to work has been totally exhausting. It is May the 8th and I have only just taken down my Christmas tree today! I have had a week's leave from work and today, the last day of my holiday, I feel relatively normal so I have done a few things that needed doing.

It has been a while since my last blog post for the same reason as the lateness of packing up my Christmas tree. However I would like to tell you today about how I eat well even when I have barely enough energy to walk to the fridge.

On the rare days when I feel up to it, I cook a large batch of something, perhaps chilli or pasta sauce or soup, all of which freeze well and are nutritious. I divide it into individual portion sizes and freeze it to use when I need to eat but can't face cooking.

There is one recipe that I have used since 1981 from the Tower Pressure Cook Book by Annette Yates. Yes, I am that old! The book is covered in stains and the pages are yellowed with age but the recipes are simple so it is a much loved book. I make this in a stock pot but it can be made in a pressure cooker, if you prefer, at high pressure (15lbs) for 10 mins, reduce the pressure slowly. If using a pressure cooker it is important to stick to the amounts in the recipe below. I use a stock pot so I can make 2 or 3 times the recipe amount so I have lots to freeze.

The recipe I am going to share with you today is called;

Lentil and Carrot Soup

Ingredients                                     Imperial                 Metric               American

Butter or oil                                      1oz                        25g                    2tbs

Rashers streaky bacon                       4                            4                          4
or slices bacon, chopped    

Onions, chopped                                1                            1                          1

Carrots, diced                                    8oz                       225g                    1/2 lb

Lentils (washed)                               4oz                       100g                     1/4 lb

salt and pepper

bouquet garni or fresh herbs

chicken stock                                   1+1/2 pints                900 mls                3 + 3/4 cups

  1. Heat the butter/oil in the stock pot and then fry the bacon, onion, and carrots gently for 4-5 minutes.

     2. Stir in the remaining ingredients and bring to the boil. Simmer gently for 1 hour until lentils are soft.  I make my own stock from chicken bones which is flavoured with fresh herbs from my garden so I don't add more herbs at this stage. Also if you freeze the soup you can add herbs when you thaw and reheat the soup.

   3. Remove bouquet garni/fresh herbs. Adjust seasoning if necessary. Liquidise the soup.

  4. Enjoy!

I have lots of individual portions in my freezer which makes life so much easier. This soup is creamy and comforting when I need to eat but don't really want to.

Eating well is so important when recovering from a head injury. The body needs the nutrition to repair the brain and provide energy. Often, though, we feel too drained to bother, so stocking up the freezer if you have a good day is really helpful. It also helps stave off my cravings for take-aways on my way home from work. 

Thanks for reading!

Monday, 11 April 2016

Concussion and Returning to Work

I had some very good advice from my Concussion Clinic Clinical Psychologist about returning to work.  'Don't expect them to understand. They won't understand and so there's no point trying to make them understand.'

This advice was helpful but in the end, the lack of understanding has caused me problems some of which have needed resolving.

When my Concussion Clinic Occupational Therapist was suggesting it was time to start a phased return to work I had one big worry. People would see me looking like 'me' and their expectations would be based on what they had known of me in the past. This proved to be the case and even now, when I am probably 95% recovered and nearly a year on from my first day back in the workplace this is still the most difficult issue I face.
Most of my colleagues have been great and those that got it wrong in the beginning have seen me improve slowly over time and this has made it clear to them that the initial problems I had were real and very challenging.
The view at sunset from my work staffroom.
I had to be quite strong when I first went back to work. I am a midwife working in a very busy hospital environment with lots of conflicting demands coming at me all the time. All my colleagues are under stress, trying to get through their work and anything that might take the stress off them appears to be fortuitous. Some of them wanted to make use of me as I appeared to be sitting doing nothing. I was actually reeling from the brain sensory overload but many of my colleagues could not understand this even when I explained it. See the blog page about 'Flooding' for more on this

 In the early days I was struggling just to be in the work environment - the bright lights, the noise, all the different people coming and going all the time, trying to look at computer screens although it gave me a headache and nausea, having my breaks in a room full of people all talking at once, laughing, raising voices, gesticulating, and in the middle of this exhausting, brain-energy-draining place I would be asked constantly by people to do things. These would seem like nothing to them but a huge ask for me. Like checking drugs which involves reading a prescription chart, remembering what the chart said long enough to check it against a tablet bottle and a log book. An impossible task for me with my short term memory problems and something I had to be very firm about - I would not do it! It took all my energy to maintain this firm stance.

Me at work during my return to work
I had enough self awareness and experience in the job to know exactly what I was safe to do and what I was unsafe to do but it was very wearing to have to continually justify myself to people who couldn't see why I had a problem with what appeared to be very basic tasks like answering the phone, listening to a handover (lots of information to take in), answering patient's call bells and seeing what they wanted - ('thinking on my feet'). In the midst of this I had 2 very gentle, caring colleagues who buddied up with me to support me. One of these women in particular was the key to my survival. She sometimes put herself physically between  me and the person putting pressure on me. She was always telling me how well I was doing and making sure I took lots of breaks. She was a Godsend and I will be grateful to her forever for acting as a buffer between me and the stress and pressure of work. She facilitated my successful return to work.

Many moons ago during my nursing
training in Bristol
However, even at this stage when I am fully back at work, taking full responsibility for all my actions, 'in the thick of it' so to speak, I still have to deal with some people who do not get it. I still suffer from the fatigue that is so prostrating that I have my pyjamas on all through my days off wondering how I will ever work another day. It takes a degree of courage to face another day but when I am at work I feel loved and cared about. Most of my colleagues are encouraging and supportive and I enjoy seeing them. Unfortunately, though, the people who don't get it make life difficult even though they are in the minority.

I'm sure that anyone else who has suffered a head injury and been through a return to work will identify with these problems. I would be interested to know how you have dealt with them. It has been suggested that I move to a job that is less stressful and fast paced. Apart from a very small minority I find my colleagues caring and supportive so I enjoy seeing them. Has anyone been through this experience and had a successful change of job? I would be interested to know your stories of return to work.

On the whole I feel very lucky to have reach a stage in my recovery which meant I was able to return to such a stressful environment and function normally again. I am learning a lot through all the ups and downs so none of it is wasted time or experience..... and eventually I will have enough energy on my days off to have some new adventures. Just at the moment though all my energy is focussed on getting established back in my former job......

Monday, 21 March 2016

Flooding - Becoming Overwhelmed After Brain Injury

This video explains a lot of what I experienced in the first year of my recovery from concussion. "Flooding" is a new term to me but exactly explains my experience of being overwhelmed when there was sensory overload. It all makes sense now...