Brain Injury Recovery – Gradual Gains

The last two weeks I have focused on specific aspects of brain injury recovery and rehabilitation. My last two posts blog posts looking at Health and Independent Living and why they are significant to me and what you, me, all of us with ABI’s, need to consider when approaching those targets.

When I finished my last post on the importance of a good foundation of health, having the conditions we suffer from as a consequence of our injuries under control and as manageable as possible that a thought occurred to me. By putting these posts back to back, one following directly after the other, have I inadvertently sent a message out, that these targets and goals we all have, each individual to us depending on the extent of our injuries and our ambitions in life, should be addressed simultaneously.

This was a thought that I was suddenly worried by. The thing that I cannot stress enough is that each target we have on our list should be addressed slowly and patiently, worked towards with an attitude of gradual gains.

What Are Gradual Gains?

Gradual gains are a method of improving certain aspect of a person’s body. It is an old technique that has been used in sports fitness. It is a fairly simple premise of trying to make small improvements on certain aspects of the body that one knows to need improvement.

If I may give an example, say you are a cyclist trying to improve your fitness. The way to do this is not to do it in a short length of time with highly ambitious goals, saying to your self “I’m going to ride an extra thirty minutes on my bike today.” Something, which will potentially damage your muscles, cause fatigue and soreness, which will then takes a few days to recover from. The best way to obtain lasting improvement is to do the opposite, not to seek ambitious goals from the off. The final destination can be ambitious; in fact I think it should be, as I believe that we are all capable of achieving great things. For the cyclist though what should be the approach to gain long-term improvement is to say you are going to cycle for an extra two minutes and do that for a week. The following week he says I will do an extra three minutes, and do that for a week. The basic idea is to do a tiny but more each time for a week or so, where you don’t feel the difference in terms of the demands it places on you or the consequences when you’ve completed the task. I think the way that we approach our attempts at improvement should be through a series of small improvements over a long period of time.

How I used Gradual Gains In My Recovery (Physical)

This time, I will give an example that is more directly related to ABI patients and how this can work in our favour. When I left hospital and was discharged into my mum and dad’s care, I had been bed ridden for nearly 3 months. I was skin and bone, my muscle mass seemed to have evaporated and I could barely stand, let alone walk. Literally, as soon as I arrived home I was straight through the door and up to my bed where a room specifically for me with a TV and DVD player had been set up where I could sleep and eat and watch TV. That was predominantly what I did for the first few weeks of having arrived home. When I needed to go to the bathroom or have a shower, I would be escorted/supported to the bathroom by my dad, who would wait outside the bathroom until all I was all finished, then he would escort me back to my room.

After a month or so of this, having gained weight and put some muscle back on through the small amount of walking I had been doing pottering around the house, we decided to increase the amount of physical exercise I was doing. So now, each morning I would walk to the bottom of the garden and back and do the same again in the afternoon. Then as things such as balance, muscle mass and confidence improved we could start walking on the pavement up to the bus stop and back. So it continued. It took about six months until I was confident enough to walk to the bus stop, get the bus to town with my mum to have a cup of tea and then come back again.

How I Used Gradual Gains (Cognitive)

The technique that I have used and the example I gave regarded the improvement of my own physical condition. It must be stated though that the exercise can work in a cognitive sense as well (so long as you are rested enough post ABI).

Just as a quick example, if you find yourself getting to a point where you want to start reading again, start reading a simple book, large font, not hugely challenging or stimulating. Using that book start reading say, five pages a day (or another a manageable amount where you don’t feel as though you could sleep for twenty four hours after). Read five pages a day for two weeks. After those two weeks increase the amount of pages you are to read by one or two pages to six or seven pages a day, and do that for two weeks. Continue this process over a period of weeks. But the point is you can take your time with it and not over stimulate yourself. If you feel that the daily target is too much then decrease the amount you are attempting.

This did work for me but it took a long time. It was only when I went to university, around twelve to eighteen months after my ABI that I started this process. Reading had become a necessity, it had really started to become easier due to the fact that I was using this process and had started reading comics & graphic novels as well. So progress is slow with this method but I do believe that it prevents us from overworking ourselves. The fatigue we feel after we have done too much and gained excessive cognitive stimulation is the same as a cyclist that has sore mussels after a particularly long ride; he has tried too much, too fast and his body wasn’t ready.

So, What Is It That I’m Saying?

What I’m saying is, that if you take the two examples I gave, the cyclist and the ABI patient, they are two vastly different examples of people with different aims and ambitions. The point I am trying to make is more regarding the time span of which they intend to achieve their goals. I have said many times in my blog and I’m sure that countless doctors and consultants have told you that the recovery process from an ABI takes time. This was my main fear that was based on the last two posts; I didn’t want anyone reading this to feel as though I was encouraging them to take on too much at the same time. In fact, right now, I want to emphasize the opposite.

Take your time with all the goals you aim for and I would advise, based on my own experiences, to take on one challenge at a time, seeking small improvements over a long period. That way we stop ourselves becoming overwhelmed by fatigue or other issues that may crop up (my epilepsy is a good example there). We need to make sure one thing is secure and under our control before we move on to the next thing. ABI recovery is a step-by-step process, a marathon, not a sprint.

 

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Brain Injury Rehabilitation – Health

In my last post I covered the potential issues and gave what (I hope) was advice that could be used or could be considered useful for those suffering from an ABI or any disability really (https://lifeafterabraininjurydotorg.wordpress.com/2016/02/11/brain-injury-recovery-independent-living/). Prior to that post I had covered what my goals were in terms of what I am working towards now (https://lifeafterabraininjurydotorg.wordpress.com/2016/02/04/brain-injury-recovery-where-do-i-want-to-be/). The first target (I have stated in previous posts that these targets are in no particular order) was regarding the idea of living independently; moving out on our own.

If you’ll remember, the last statement in my previous blog (based off of my own experiences or inexperience’s depending on your point of view) was to ensure not rush the process of trying to gain independence. The most important thing with regards to that goal is to make sure you give yourself the best chance of succeeding. In my opinion, the best chance you, your family, friends and any other support you may have can make for yourselves is to ensure that your health situation is as under control as it possibly can be.

Like Building A House

The problem with this, with a lot of the things I am saying, is that we need to take our time. I have found this incredibly frustrating, personally. When you want to get out there and see the world, get a job and a career, settle down with a partner; what most would call the conventional route in life. Unfortunately we do have to accept that for us, following a “conventional method” is going to be extremely difficult and a long, hard slog.

I suffered my injury around six and a half years ago. I spent three years at university, which was a relative success. The other three and a half years were spent, in one way or another, finding out that independence would not be possible until my health was in an appropriate state to allow me that independence (the examples of the problems I encountered that were related to my health in my last post, regarding my desire to live on my own, independently in my own place).

All of the time taken up by this struggle, the things I have lost and the terrible time I have put my family through; I’ve hated it. But I think it all comes down to finding a way to look at things in a different light. Perhaps use a metaphor, or some kind way to visualize the your goals and the successes you want to have in the future. For me, the one that seems most appropriate is building a house (sounds weird I know but go with me on this one).

Laying A Foundation

Just like the rehabilitation process of an Acquired Brain Injury, the building of a house takes time and has many different facets to it; the first and perhaps most important step, to lay the foundation. In our case the foundation of the house we are building is good health. We need to make sure that as many of the health related obstacles we have to face on a day-to-day basis are under control. Whether that is ensuring we have the appropriate equipment to manage any particular physical disabilities; that we have the correct diagnosis and medicines to treat any illnesses whether physical, mental, or neurological and that we are in control of all of these things. It may mean needing help from a carer or family member but I do believe that many of us will be able to do it independently, given time and so long as we believe in ourselves.

When we do have control of our health situation and this foundation is firmly in place, it then becomes something we can build on. With discipline and with determination, this is a very real possibility for many of us. If we can get our health situation under control it becomes the platform we can build future successes upon and continue to progress and move forward over time.

A House Without A Foundation

The main reason I say that building a foundation of good health before going after some of the more ambitious goals you may have on your list is because I am speaking from experience. I believe that the majority of my own misfortunes when it comes to the pursuit of my own happiness are due to the fact that I wasn’t ready from a health standpoint.

Most of the time, the bad experiences I had when it came to pursuing my goals was due to the fact that my epilepsy was poorly controlled. At this moment in time it is poorer, I think, than it has ever been it terms of the frequency of my seizures. These fits are full-on Tonic Clonic seizures as well. No warning, no aura, straight out of the blue and I’m on the ground, waking up and normally hurt in some way and worn out to my very core.

My point is that while the chances of things such as (we’ll continue to use my experience of epilepsy as the example) seizures, are likely there is no way I will be able to be truly independent. It will always be there to pull me back just as I think I’m pulling free of it.

Finally…

With a firm foundation and being able to rely on your health, to be able to rely on your body and your brain as much as is physically possible, it will allow you to progress without the fear of the rug being ripped out from under you. That is just the beginning of a huge a project with many more exciting things to come. Some people will tell you that many of the things other people (who don’t face the kind of challenges we do) achieve are not possible. THEY ARE IDIOTS! DO NOT LISTEN TO THEM!

We, ABI patients or any other disabled person, can achieve whatever we want with the right effort and strategy. We can have a fulfilling job and career, a partner, get married, and own our own property. These are all things that are possible.

We do however have to find the right way to approach our goals while considering our injuries and set realistic goals. We have to rationalize the way we think about the injury so that it is not a constant flow of negative thoughts about loss and unfairness. Instead we need to think about what we want to accomplish and look at how we can achieve our targets in steady steps. In my opinion, building any future plans on a foundation of good health is the first positive step toward accomplishing the dreams you have for the future.

Brain Injury Recovery – Independent Living

In my post the week before last, I moved on from asking Where Am I Now? am now regarding my brain injury https://lifeafterabraininjurydotorg.wordpress.com/2016/01/28/where-am-i-now/; asking questions like, what are the permanent physical consequences of my injury & how does my injury affect me both socially and domestically? What are my strengths & weaknesses? After I felt I had answered those questions in a sufficient manner, the next step was to highlight the goals that were most important to me. The intention to assess them and look at the potential difficulties I would likely encounter. https://lifeafterabraininjurydotorg.wordpress.com/2016/02/04/brain-injury-recovery-where-do-i-want-to-be/ Then I could think about how I would go about achieving them, the steps that needed to be taken, taking into account the answers to the first question I asked. Following on from last week and the goals I picked out as being most important to me, here is my view on my own situation regarding moving out and living independently.

Getting Out On Our Own

This is something that every adult, young or old, male or female, rich or poor, disabled or fully abled wants as they progress through life; independent living. As you get older and become an adult there are certain things that change in who we are. We develop social lives, a love life, particular interests and hobbies that are our own. We come to the conclusion that we want our own personal space; we do not need to be under the constant watchful eye of a parent. We can look after ourselves, perhaps in a nice, cheap, little one bedroom flat. With some tender love and care and some Ikea furniture, we could definitely make that place our own.

The Considerations & The Struggles

In the paragraph above, I painted a very romantic picture of what living independently is like. What I learned from my own experiences is that there are pretty severe reality checks in store. We hold the kind of romantic vision I described above in our heads. However, what comes with living independently is a series of heavy responsibilities that need to be taken seriously.

There are contracts to be signed, rent to be paid, direct debits to set up, bills to be paid to name just a few and finally, ensuring you are earning/receiving the money to ensure all of the payments can be handled. Also we must consider the fact we have to look after our new abode and we are also depending on ourselves for survival in terms of food, money and all the other necessities involved in life. We also must manage our conditions that have accompanied the ABI. We cannot be under any illusion that we will get to a point where these disabilities will go away completely. However, There may come a time with the right discipline, help and determination that we can get them under control. A position where we control our conditions as opposed to the conditions controlling us. To do that though means being strict in terms of taking the right medication at the right times.

Why I Do Not Live Independently

I have tried on three separate occasions with varying degrees of success to live independently. The main obstacle in this process over the past five years has been the ever-worsening extent of my epilepsy. Here are the ways I have tried to live independently

  • University was, to all extents a success. I achieved a 2:1 (BA) degree despite my ABI with a lot of support from the university and epileptic episodes were kept to a minimum.
  • After university, I went to live in London to pursue my dream of being a writer. Again, epileptic episodes were at a minimum but slightly higher than they were at university, which meant my dad having to come all the way to London once a month to check on how things were going with me.
  • After a year of living in London due to financial reasons as well as health reasons it was necessary to move back to Dorset. Upon my return, I found myself a flat and a job. It was at this point that things took a turn for the worse.

While I was living independently in Dorset, the number of seizures I was having escalated hugely. Being a larger than average young man (around 6,2 and 17.5 stone) I usually end up with a broken bone or a losing some teeth after a fit and living alone put me at huge risk if, for some reason, the fit I was having escalated and my health was put in more jeopardy. With the seizure’s becoming more and more regular and the potential risk to my health while I had one rising, it had become clear that living on my own just wasn’t practical or sensible at the time.

What Did I Learn From My Attempts?

What did I learn? Well, firstly that living alone and having your own space allows you to be who you truly are and it is wonderful to have that kind of freedom and independence. What we should all be aware of though, is what that truly means. Independence means you are doing it for yourself. For people in our type of situation where there could be a crisis or an emergency regarding many things; physical health, mental health, panic or anxiety attacks, it may be a good idea to ensure the place you have chosen to live is not to far away from people you trust who will make every effort to help you.

Secondly, I would say that moving out and taking care of a place of your own is far more complex just in terms of the technicalities and bureaucracy that are involved in making the whole thing official. Sorting out housing contracts, direct debits, council tax and ensuring that the place is right for you depending on your situation are complex issues that can be confusing for anyone, let alone someone who has suffered an ABI. This leads me to number three…

The third thing I learnt follows on directly from number two. I would advise anyone who has suffered an ABI to get someone reliable whom you trust to act as an advocate on your behalf. Or, if it is necessary, take advantage of the help the social services may be able to provide or it may even be a good idea to go and see an attorney who can help guide you through the process and help clear up any misunderstandings so you know exactly what it is you are signing up for. Just to clear up the bureaucracy that is in all those contracts. It is unfortunate, but there will be people out there who may try to take advantage of situations such as ours.

My last Piece Of Advice

Finally, My biggest piece of advice to anyone recovering from an ABI or a disability is to not rush the process. To take your recovery a step at a time and this is one of those steps that should only happen when everything is in place and everything is ready for it to happen. Particularly, only when you are healthy enough for it to happen. That is when you will have the most chance of success.

Brain Injury Recovery – Where Do I Want To Be?

N.B. Before we start, may I apologise for my absence recently in writing fresh blogs inconsistently for https://lifeafterabraininjurydotorg.wordpress.com, the last few weeks have been an unmitigated disaster regarding my epilepsy. You have been fantastic over the last five or six months and I can’t apologise enough. They have changed my medication now though, dosage and type, so from here I’m hoping for progress and more consistency on my part. Thank you again and please follow my blog, follow me on Twitter, my handle is @ABIblogger and share the posts on there, that would be immense! Now, we shall begin…

Going Back A Bit…

The lead up to this blog post goes quite a way back, so let’s start from there. Over the festive & New Year period, I was considering the idea of change and what that exactly entails. When I say change, I mean actual change. Not the usual rubbish you seem to get at that time of year; “I’m going to give up drinking,” or “I’m going to join the gym and go at least three times a week.” Most often, what actually happens is that the first promise is broken by the end of the first day back at work after the Christmas break when, after work, we’re gagging for a pint. The second is broken by a gym membership that is used three times, never used again but continues to take £19.99 out of our bank account every month for the next three years.

The problems with these examples are not the promises in themselves but the way in which they are made. The two examples I gave are very noble promises done with nothing but good intentions for the person’s health. However, while the promises in themselves are good ones, they are very rarely built on a foundation of reality, quite the opposite in fact. They are made in reflexive manner without thinking of the variables in their lives; the constraints on their time, their strengths and weaknesses and, in the end, the promise filled with good intent is doomed to failure.

Where We Are Now?

Now, my first post of the New Year spoke of the nature of self-assessment. Last week after a missed update (due to epilepsy related complications) I tried to lay it all out in the open for you in a way that was manageable in terms of length and that was hopefully readable and something you could all relate to. I would hope that in the month that has passed since I posted A New Year – Self Assessment (https://lifeafterabraininjurydotorg.wordpress.com/2016/01/07/a-new-year-self-assessment/) all of you who have been reading my blog have had time to look at yourself, look at your current situation and ask what is possible and what is not, assess your own abilities & disabilities, strengths & weaknesses, what you enjoy and what you do not (hopefully last weeks post – Where Am I Now – https://lifeafterabraininjurydotorg.wordpress.com/2016/01/28/where-am-i-now/ should have given you some indication as to the type of thing you need to think about) Hopefully, having thought about these things, asked those difficult questions and answered them, having really looked at yourself, you will be able to answer another tough question: where do I want to be?

Where Do I want To Be?

I think there are certain things that we, as victims of Acquired Brain Injuries (ABI’s), can all say. From here I am going to assess the four things in a brief way (if I want into depth on them I’d writing an essay!) that most of us have a burning desire for. Firstly, I will be putting them in no particular order. To give them any kind priority would be insensitive and ignorant on my part as I know that many of you reading this would put them in a different order, may have completely different permanent issues than me, and some people would want to exchange one or two for other things (also I have ways to link up the subjects quite nicely in terms of the flow of the writing and the way it reads). The plan will be to go into these topics in detail in the coming weeks in the order they are listed in today and how to potentially overcome and work around the obstacles that have been put in front of us through misfortune or chance.

Independent Living

When I say independent living, I am speaking in the broadest possible context. Independence can only be defined, interpreted and achieved to the extent that our brain injuries and the subsequent disabilities we suffer from allow us to. Whether we are able to live alone and manage all the complexities with it; complexities such as housing contracts, sorting out direct debits for paying the rent & bills, or paying for insurance and council tax. I myself did not realise the extent of the complexities and technicalities involved in just sorting through the bureaucracy of it all.

Then there are other options such as living with a professional carer, parents, other family members or partners being employed as a carer (for which you can receive a government funded carer’s allowance depending on your income). As well as the carer’s allowance there is also the social housing list and housing benefit depending on the severity of the disability of the disabled person involved and the income of the carer if they are not a professional and are someone like a parent or partner.

Finding Employment

When it is all signed, sealed, delivered, then comes the issue of supporting ourselves financially and accessing the support (both in terms of financial welfare and front line social services. In this section the issue of employment will be particularly important. Finding the right employer, the right type of work for someone in our position, working hours, contracts and unions.

There is also the important issue of not allowing us to be discriminated against by employers. It is unfortunate but it does still happen and in many different ways. The important thing is to recognise when you are being discriminated against and when you are being treated unfairly and how to respond to that situation.

Looking After Myself

Maintaining personal hygiene, eating a healthy diet, regular exercise, cleaning your house or flat, washing your clothes. These are all important things we have to learn to cope with. But there is also the issue of building a social life, socializing with our peers, even forming romantic relationships. It is important to keep an eye on mental health as well as physical. It can be easy to slip into bouts of depression, aggression or mood swings. Here, I am speaking from experience; I know of what I speak.

All of these things come with independent living. Trust me, I have done it on three occasions, I am twenty-six and still living with my mum and dad.

To Have Control Of My Life Back

There are certain consequences of ABI that make life very difficult for me: panic attacks, mental health problems, increased stress, tonic-clonic epileptic seizures to name just a few. What I am going to do is work hard, research and learn as much as I can about my conditions and aspects that may benefit me: diet, exercise, things that may induce a seizure or a panic attack and record what I find. In the next year, I intend to know myself inside and out. So I can begin to take control and move forward.

These are the subjects, in that order, that I will be covering over the next four weeks. So come again next Thursday where I will be talking about independent living, the obstacles that we must overcome and the problems that are presented to us as disabled people. So follow Life After A Brain Injury  get the next update direct to your inbox. For more news and updates, follow me on Twitter. My Twitter handle is @ABIblogger.com. Finally in addition to Twitter, I am just starting an Instagram page which is in its infancy but I would love for you to follow me on there as well, my user name is abi_wordpress_massey