A relaxing potter in the garden….

What could be nicer than a potter in the garden to cool down after a hot day? I am envisaging a recliner, a G&T and a bit of therapeutic dead heading, bliss!

Can you guess what I am going to say next?! Yes, the reality of this was somewhat different. My wonderful care team (who love me for my honesty) have systematically created an assault course of a garden that to a person with a brain injury probably rivals military level courses. 

The first challenge is the paddling pool. Normally generally harmless, unless it is placed under the washing line risking sinking with every load. Who knew laundry could be dangerous. Some may say that this kind of living on the edge makes life exciting. Carer No 1 thinks this type of danger is character building. Carer no 2 has already worked out what to spend the £250 from ‘you’ve been framed’ on.

My amazing neighbours have very kindly given me two recliners. They are extremely comfortable and will be a godsend for the summer. However Carer No 1 got slightly carried away and has left them fully reclined in my exceptionally small garden obviously thinking that my gymnastics abilities from when I was eight are obviously still applicable.

The evening was finally topped off with an electric shock from my plastic chairs. Who knew brain shunts leave you not only with an electric personality but at risk of static shocks from normal everyday household objects. No wonder I have the odd grump.

My evening has been more survival of the fittest rather than gardeners world. It can be jolly frustrating to realise that enjoyable pastimes that seem like simple pleasures can be quite difficult with a brain injury. There of course is always a silver lining to these scenarios, one just has to find their new one.

Who knew that one small garden can make life considerably more difficult for some people. Obstacles don’t just cause falls they can cause you to lose your balance for a split second which frightens the life out of you and affects confidence . They can arouse frustration at your limitations and act as a constant reminder of the difficulties you have.

If you know someone with a brain injury, leaving things lying around will probably mean a lot more to them than a mess.

                       

A relaxing potter in the garden….

It’s hard staying positive 😕

I surprise myself sometimes how I get up in the morning and cope with life but some days like today it just gets a lot harder.

Please don’t think this is a bid for sympathy , it’s an outburst of emotion to show that sometimes one does let down their guard because you can’t physically or emotionally hold it up any longer. 

Apparently we can be assured that this is quite normal and it is okay to not cope sometimes.

I’m not having a breakdown just a temporary loss of emotional control resulting in the odd snort and over reaction.

On the plus side a lovely gentleman caught me today when I threw myself at him on a whim. The truth to this is that I fell over and luckily the poor unsuspecting man blocked my fall. 

That is a brain injury in a nutshell, it can be glamourised but sometimes when it’s in black and white it’s a bit rubbish.
Xx

It’s hard staying positive 😕

Sports Day

When I put the first Sports day in my diary for my 4 yr old I didn’t give it a second thought. It’s a rite of passage of us overly enthusiastic first time parents and I didn’t give it a second thought. Why should I, it’s going to be a great day out?

I am obviously starting to forget that I have a brain injury from the above statement but it hit me like a ton of bricks a few days before. The mixture of emotions, I can’t wait for sports day, I am absolutely dreading the practicalities of sports day and I am so frustrated how a problem I have is impacting so heavily on this situation. Frustration is my biggest battle in life and this was a huge reminder.

So the big day arrives and frankly I am dreading it. You wouldn’t think so if you saw our morning ritual. We had a sporting breakfast, a briefing on winning and quite a few renditions of ‘we are the champions’. It was sports day and it was going to be brilliant. 

After battling a cross country trek to the sports field (in reality a trip across the playground) I am ignoring my limitations and taking in the atmosphere. To be perfectly honest I was becoming very overwhelmed with the situation obviously in a very calm and controlled manner. I’m not sure how I would have faired had I not been surrounded by good friends. Forget superfoods what we need is super friends. These are the ones that do the little things that allow me to function. They really are amazeballs.

So then carer of the year arrives with a camping stool. I am not sure if there is anything more impractical for someone with a brain injury. Firstly it’s so low down that it requires a squatting action (not attractive when you have little balance. It then has two flimsy legs which is debatable as to whether it will hold my 10 stone figure and no back support so the risk of falling of backwards is greatly heightened. How I survive on a day to day basis I have no idea. I can only think I am kept on my toes as a motivating tool to ensure I keep going.

So I worried all night and day about the parents race. Literally feeling like a huge disappoint to my daughter for not being able to participate. There was no parents race! However instead of being relieved it was just another frustration. I still have no idea how to channel this so general grumpiness displays.

It was a fantastic day, the kids were amazing, the parents got into the spirit of it, I was an extremely proud mummy if a little pushy at times and even though we didn’t win ( I am not sure the scoring was up to much!) I enjoyed it.

When I say I enjoyed it I must have had a whale of a time as the difficulties of the day were outweighed by the good stuff. Just a word of advice to all parents,  don’t stand anywhere near a goal post as four year olds have a very random penalty technique. Especially dangerous if you can’t move very fast.

Having a brain injury can literally ruin every moment you should be enjoying. I’m not sure one can ever get rid of that underlying worry as it does need to exist to aid self preservation. I haven’t found that answer but I do know that the constant trying is very hard but more often than not it’s worth it.

x
  

Sports Day

Does my cat know something I don’t!?

A bit of a random post tonight but I have just been thinking about our Pets reaction to one having a brain injury. Our pets especially cats and dogs are supposed to know when we are not right even before we do.

This theory has troubled me tonight as I am sure my Cat (the gorgeous Bob) is attempting to commit euthanasia by tripping me up at every given opportunity! He is literally attached to my feet and this is fuelling my suspicions! Is this a case of survival of the fittest and Bob is seeing my weaknesses. Is he asserting his position as the alpha male (on that note I am female but he has had his bits done so we are pretty much on par!). I’ve never really thought of being viewed as weak (due to having a brain injury) by the animal kingdom but it is actually now becoming a worry. 

On that note I am going to avoid a safari trip for the time being just to be on the safe side and maybe think about getting out more to avoid any future lightbulb moments of this kind x

  

 Butter wouldn’t melt – huh!  

Does my cat know something I don’t!?

Your loved ones in hospital – A guide

This situation has probably not been planned and you will probably be running on adrenaline and shock. At this point the best thing you can do is to channel this into being practical. 

Your loved one is being treated and they are most likely to be preoccupied with being unwell etc for the meanwhile. A strange thing happens in hospital, one begins to feel much better and from experience I can only think that this is the relief that you are in a place that is able to help. It’s much more relaxing to have heart failure in hospital rather than up a mountain! 

Your loved one will be worrying about the kids, the cat, the bill that needs paying, the meeting they have today and there is no milk. These are all things you can sort to remove those anxieties. This really is the best thing you can do to help.

There is so much information out there on what you need to take into hospital when you have a baby but what do you need when you are in for something slightly more pressing!

Most surgeries etc will limit movement to some point so don’t go for over the head pj’s, button up is easier. Don’t take in anything to clingy though, those drugs can make one a little bloated or in my case like the Michelin man. 

A pair of loose fluffy socks (snoozies) will become their best friend. It’s a myth that hospitals are always boiling hot. A reuseable coffee cup (keepcup.com) will make sure their cup of tea stays a little bit warm when they are whisked off for a scan just as the tea round comes. A good pair of headphones (well two actually) are also a godsend. In ear and overhead earphones are great for the TV and audiobooks. It may seem strange to suggest two pairs but trust me the patient may have new difficulties and fiddling with in ear phones is a nightmare when your hands do their own thing and overhead are jolly uncomfortable when you’ve just had brain surgery. My final godsend of a suggestion is Spanish cologne. This is a refreshing spritz (purespain.co.uk) which is amazing when you can’t get out of bed for a wash. It perks you up immensly.

It is also too easy in this situation to forget the basics. Yes, it is possible to pack 3 pairs of trackie bottoms and 3 pyjama tops of which none can be worn together 😉

So you’ve settled into hospital regime and your loved one has turned into a demanding toddler? Remember they don’t have a lot to do in hospital so if you say you will be there at 10, be there. If you are 15 minutes late that will seem like a lifetime to them. Please try not to forget anything as that thing may well have been their main focus for the last 24 hours and finally don’t complain about how tired /worn out your are. I can assure you that your patient will be consumed with worry for the incovience they cause their loved ones and would swap places with you in an instance. 

Grapes anyone? As yummy as they are they generally just shrivel in hospital and get dusty (yuk!) so what do you take in? 

If nausea is a problem fizzy sweets, ginger biscuits, salt and vinegar crisps and full fat coke are amazing. Maybe team this with some prepared fruit, some cordial and a homemade sandwich. There is nothing better than something that tastes like home.

To read? Magazines etc are great but reading may be difficult. In my experience I couldn’t read so audio books were fabulous and when I suffered with my vision a kindle was perfect as only having one page of text stopped the words being jumbled. How about an iTunes/Amazon voucher so they can buy themselves a film/ book etc? Be inventive, it works wonders. A very good friend of mine brought me in a bottle of tonic water, well I was home within a few days as couldn’t wait for a g&t. It’s amazing what motivates one when your not well.

Suggesting a new hobby (crochet was my saviour!), nice toiletries, updating an iPad (very few hospitals have wifi!), a McDonald’s or a vegan salad whichever floats their boat, a costa coffee, a good old chat with a friend and answering your phone when your loved one calls are all things that seem trivial but at this point in time focal points for your loved one.

Try to remember that this time is very stressful for all. Everyone is finding this difficult in their own way. Turn that frown upside down and get on with it because you have to. Losing is not an option.

I feel I have been through the mill with my fair share of hospital dramas, I have been left in a loo for half an hour, ( on more than one occasion) met some amazing people, had my mother suggesting to take a photo in the shower when I had my head shaved and a she wee catheter (attractive), been abandoned in a wheelchair on hospital corridors, had a Halloween party on the ward, met the best and worst nhs staff,  tears and tantrums numerous times, amazing support from my family and friends, got divorced, been punctured with needles more times than I’ve had hot dinners, learnt to walk, misdiagnosis,  lost my speech, came to realise that travelling in an ambulance is extremely uncomfortable, realised that you actually start to feel better when you become seriously ill, numerous stresses over eyebrow waxes and nails and just to top it all off none of this really matters as you still have to get on with it. 

Do make sure you fill out a patient experience form. Do your bit to ensure consistency of care across the nhs and private sector. 

How we laughed!

Your loved ones in hospital – A guide

How rude!

Writing this blog is really making me examine how I live my everyday life and this scenario can only be explained by an example! That’s the Law degree background coming into use!

I was out for dinner with a group of some of my favourite people ( they will obviously be anonymous for the purposes of fairness). It was an early dinner, the food was nice , the setting lovely and the people great, I was having a great time. Then bang after dinner that was it. My attention span ran out and the happy go lucky life and soul of the party quickly became agitated, disinterested and preoccupied with nothing in particular. To put it in a nutshell I came across as rude. 

This is a reason for this blog. I am absolutely not in any form rude and I would be devastated to think I had upset anyone by my change in persona. Please realise at this point I cannot concentrate anymore on conversation, I am tired of making sure my words come out properly, I am finding it difficult sitting in a chair that I don’t feel safe in (that’s my dodgy balance) and I have had to put full efforts op into holding my knife and fork politely alongside praying that I don’t dribble my sauce down my chin. Just to top it all off my swallowing is compromised so I often feel like I choke when I eat or drink. Apart from that I have fully enjoyed myself .

What to do in this situation? Luckily in this situation we could end the evening and head back home having had a lovely time. This lead me to thinking what could have helped in this situation? Becoming a recluse is not an option! In conclusion one just needs to get on with it. It would be great however to know that my company didn’t bat an eyelid because that’s just me taking another baby step in understanding and trying to be Tamsyn.

X

                                     

How rude!

What happens to someone’s personality after a brain injury?

The answer to this is that you are probably more likely to win the lottery than to be able to answer this. In my personal experience this has been one of the hardest things to ascertain and still is.

When people ask me to describe how I feel the first thing that comes to mind is grumpy. This is a conscious grumpiness likened to the Grandad in Father Ted who sits in his chair and responds to questions with two choice words which I am sure you can guess.

When I started on my career path I underwent extensive personality profiling. At interview the managing director knew the best and worst parts of my personality and I was gobsmacked about how a test can tell so much about a person. Obviously I have relied heavily on this information in everyday life and have gained huge mileage that apparently I am very rarely wrong due to my analytical abilities! However I now have a brain injury so where do I stand now?

I literally have no idea what my personality is. I spend 85% of my time trying to remain upright, stop feeling dizzy/nauseas and concentrating on what I am doing and saying. It appears subconscious automatic actions no longer exist. If I do try to do too many things at once this will generally end badly. I can assure you that it is very realistic to cry over spilt milk when it’s the tenth time that day you have dropped something.

This brings me onto the subject of frustration. I think this is probably the biggest cause of my new found grumpiness.Simple tasks now take effort and concentration to carry out and usually involve annoyance that you know it’s simple and you used to be able to do it so why can I do it now. 

A very real example of this is caravan holidays. These can only be described as complete nightmares for some of us. Why I would want to cover myself in bruises from bumping into everything due to space restrictions, lose my balance due to the bouncy floor, risk my life everytime I leave the caravan by negotiating the ridiculous steps and just to top it off navigating back to a caravan in the dark in a park where all the caravans look the same. This does not make for a relaxing escape.  This is much to the frustration of the rest of my family who love caravanning.
Brain injury also has its oddities, you can decide if this is is a good or bad quality? I can no longer afford to waste time talking to someone or doing something I don’t want or need to be doing. This takes too much effort and I would rather use that effort wislely. Obviously this can occasionally come across as rude to others and that is the point of this blog. It’s hard work having a a brain injury, we cannot afford to waste valuable limited energies on pointless tasks. I am slowly becoming an mean, not so lean efficient working machine.

I can pretty much say I now and have the best and the worst personality in the world, it’s a working progress and will probably never be formed completely. I know so much but also know nothing, I just need to arrange this into some sort of order to ascertain who I am. I often find myself doing things in the way of my old personality but are they still me? I sound ridiculously confused but am in reality very simple. Frankly I don’t have the time or patience to concentrate too much on this as I need to get on with living.
I am learning new things about my personality everyday. I know I am a control freak but I need to be to cope with everyday life. I know I say the wrong things all the time, that’s life. I miss out on so much but frankly I am quite relieved I don’t have to go on upside down rides, skiing or bungee jumps. I can’t feel too much and keep myself on an even keel so I can cope with my situation. I hate being out of my comfort zone, I am not being a wimp or lazy it generally petrifies me and adds even more pressure to an already uncomfortable state. I can’t remember things from one minute to the next. I sometimes put the washing up liquid in the fridge. I may have done something but I come with no guarantee. 

If I love you, I really love you , if I like you I really like you and if I don’t feel anything that is not personal I just cannot process too much.

Someone with a brain injury is worth spending that extra effort on because there is a personality under the shell xxx

                                                                 

What happens to someone’s personality after a brain injury?