It’s been a bit of a week and to set the scene the most trivial event was being mistaken as a horse (which is always disappointing!) by a horsefly and therefore being bitten which was very painful; this, therefore proving that the law of attraction obviously does work because if I am going to insist on being grumpy these things will inevitably happen 🙄
To be very honest I am feeling really rather lost at the moment. Not completely lost but I am just very bored of discovering on a daily basis more obstacles to living with a brain injury. I think I must have hit a wall whereby reality hits and things aren’t going to improve; so you have to accept that life’s going to be hard for a blooming long time. Most days something happens that makes me feel I am being constantly stopped in my tracks and dragged down by my acquired disability and just sometimes maybe we do give up a bit and it does get too difficult. That maybe does sound slightly dramatic in that we don’t just take to our beds and roll over and die (think that probably warrants a do not try this at home warning!) but that we get up, we do what we need to do and that’s all we can do. We don’t have anything left for anything further. I don’t know whether thats frustrating or whether or not I can actually be bothered to be frustrated about it anymore as I obviously will always keep going because I have too so frustration is probably just a waste of time. I would like someone to wave a magic wand and make it all better but that’s probably unlikely to happen ( note the probably, I still have my optimism!).
A very wise friend told me that I can do anything but I can’t do everything. I just need to find my anything?!
To be completely honest. I don’t know how I got out of bed this morning. My nausea is a shocker today. Sometimes there were tears at one point. It all feels totally overwhelming. I am struggling. I feel really unsafe in this environment. I am finding it quite difficult to concentrate on talking and remaining upright at the same time. Am experiencing hearing issues. My shunt is playing up horribly. It is unsettling being in loud environments or wide open spaces. Bright lights are uncomfortable. Continence issues. Obstacles on the floor are a constant danger so I find it difficult to manoeuvre around new places when I don’t know the layout.
But what generally comes out…
I’m good thank you, how are you?
It’s a tricky one! Should we be honest and say how we feel? There are so many arguments for yes and for no. I’m intrigued to hear what you guys think?
Ps I think I’m in the no camp. To be completely honest (and potentially slightly pessimistic) things could always get a lot worse so why let’s not save our thunder for that day.
So tonight and a few times this week I have been asked if I am watching the new series about the workings of the NHS. I of course use this term in its loosest possible sense.
It aroused a simmering frustration I obviously harbour with my NHS experience. This is not the anger associated with catastrophic treatment and management of my condition which is far too long winded to get into but just the general NHS day to day experience; the everyday management of a chronic condition.
The only way this can be described is exactly like our national lottery system. Generally your not likely to win, you accept your loses and take it on the chin. This is just a normal state of affairs for us. We don’t expect to win. Sometimes you might win £10, quite rare but not unheard of. A nice experience, leaves us feeling satisfied and more importantly keeps us paying into the system. Then once in a lifetime you might hit the jackpot. You find that gold standard of treatment and you are on top of the world. Unfortunately though just like a lottery win it’s not infinite so one still has to keep buying a ticket and so it continues.
This is the reply to a friend who asked tonight if I had watched the programme
“I don’t want to watch it. People keep telling me about it and I just get really frustrated as I have had these experiences i.e. Bed management etc and I sometimes just feel like no one has listened to me 🙈 sorry rant over, it’s a very raw thing “.
I really can say I have experienced the NHS at its very best and it was brilliant, I have experienced it when it was just about acceptable and have suffered when it’s been at its very worst unfortunately on more than one occasion; and the only conclusion I make is that every time you step in there it’s a lottery. But as they say, “you have got to be in it to win it!”
I think I can safely say I can pretty much be useless at coping. I do absolutely cope with the big stuff, it’s the little stuff that can and does make life just that little bit more tricky.
Take just a normal day. I have a hospital appointment to attend and a lovely supper with friends to look forward too. How lovely. However due to lack of organisational skills I have left some homework from a course I am doing to the last minute, I had completely forgotten we had to bring along a sharing plate the next day, the things I had planned are having to be moved around and the last incident nearly toppled me over the edge. That horrible mental whirl and lack of ability not to panic is not a good start to today (and it’s only 9am). I’ve still got to get dressed etc and am becoming less motivated by the minute.
These problems are trivial everyday things that have simple solutions ( when one is calm and takes a step back ) but it’s the juggling and planning that’s doesn’t come easy to us. The ability to remain calm and take a step back is such a physical and emotional action so can often be a hard step to make. The heaviness of mental flooding literally does make my head feel heavy.
Even more frustratingly I could normally emotionally eat my way through the frustrations but am cutting back so that’s not been a great help 🙉🙈.
Ps word of the day is quite obviously ‘frustration’ today.
I am obviously subconsciously incredibly vain. I love my clothes, bags and make up and try not to look too shabby on a daily basis ; so being told I had to have a walking frame did not go down overly well.
I have a brain injury and am at huge risk from falls which could and is quite likely too cause further damage. So obviously, taking this into account it’s a no brainer (that pun was not intended but did make me chuckle), I need to use a frame.
However, using a frame I would look disabled. People would look at me differently.
The reality is that firstly people stop me constantly as my walker is very cool and people love the concept of a mobility aid that is stylish yet practical; or people come across very perplexed as they can’t really understand why a wannabe trendy 34 year old would be using a walking frame. I can almost see them trying to work out what is wrong with me. However the moral to this story is that in reality no one is particularly bothered about whether I have a frame or not and that actually I am now safe when out and about, I can do so much more and frankly needed a little bit of getting over myself.
In a nutshell, feeling safe is a game changer.
In reality, the people we worry are judging us are probably only worrying about something they are self conscious about so really we should just do less worrying.
Waiting in the waiting room of St Mary’s hospital I spotted this girl and immediately was drawn to her. She was a similar age and was also with her mum. I weirdly had a sense that we had a lot in common but it didn’t even cross my mind to say hello. As we do we carried on with our wait (obviously a long one as is compulsory in the nhs!) and didn’t give it another thought.
Someone had a plan for us though and we both ended up sitting next to each other for bloods in yet another clinic wait.
I couldn’t hold it in and started up a conversation. I felt like I was watching a mirror image of myself answering back. This requires a little more explanation but when you have a brain injury everything requires so much concentration and so any added scenarios can often deplete those supplies further. A classic example is that Carer number one will chat to anyone and everyone. I on the other hand need to be selective for self preservation reasons and so often avoid situations like this which often looks rude but it really is not.
This is what hit me with This girl. I immediately saw a hesitation, a little bit of panic, a little bit of I’m not really up for chatting and a little bit of I would really like to chat. Oddly enough there isn’t one word that can sum up that emotion and even worse it is even harder to deal with as it takes a little while to compute.
It felt brilliant to see this as I felt I saw how I feel in a third person.
After an evidently shaky start (well from my side definetly) we had an amazing chat and have been keeping in touch.
Anyone that knows me will agree that I am not one of nature’s natural campers. I’m okay with that and that’s were I intended to leave it. However in the spirit of pushing myself the idea to camp from Carer number 1 was put into action!
Well, the experience generally involved various obstacles at every turn. There were guide robes tripping me up at every given opportunity (at one point I was convinced they were almost following me!), navigating by torch light (not overly successful), attempting to dress in a restricted space and the walls move when you go to steady yourself ; and I completely refuse to even attempt sitting on a bucket toilet! To top it all off who decided to make mosquito repellent oily ?! This turned walking in flip flops into an extreme sport!
Being completely honest, it didn’t work full stop. It was a struggle and struggles cause grumpy monkeys. I would join the group for the days but retired to home comforts come nightfall. Frustratingly it’s now really not for me. Brain injuries don’t like challenges and guide ropes on their own are not friends of those with balance problems. We do need to challenge ourselves but maybe not so much on holidays?
This is obviously my own experience so please just take it with a pinch of salt. Camping is not for wimps (I officially put myself in this class).
The saving grace from the whole experience was that the company was fantastic; and finally I reluctantly admit that it can at some points be very relaxing sitting in a field, chatting and embracing a bit of nature 😊
So obviously this may at a first glance appear like a rant but it actually clearly demonstrates the importance of how we treat people.
IT is not one of my strongest points and I get by but understanding technicalities of clouds etc these days I leave to the experts. This is were it all went horribly wrong, dealing with the ‘experts’.
It was a routine visit and pretty straight forward but then single handily the advisor started to question my opinions and facts and at some points even accused me of lying.
This is were the old brain injury kicked into action. I was doubting myself. Had I done something wrong (I was pretty sure I did have an iTunes account and hadn’t downloaded 5000 songs illegally as I honestly would not have a clue how too) and was I forgetting things (actually no my voicemail history backed up my story) but still I was left feeling bullied and vulnerable with a member of staff and a manager virtually reading me the riot act. My confidence obviously wasn’t as strong as I thought it was and I was left feeling vulnerable. I didn’t have the energy to fight anymore so I surrended and left deflated.
It’s pretty pants when your self confidence takes a bashing so that’s just another one to add to that long frustrations list.
Maybe people need to be just a little bit kinder as you never know who you are dealing with…?
One of the hardest things to do after a brain injury is to accept you need help, closely followed by learning to live with someone helping you. The Carer/cared for relationship is so complex and so when you find a special one it’s really time for your emotional intelligence to dust off those cobwebs.
Carer no 2 was with me for three years and when we came to the end of our road together, emotions were doing somersaults.
Having my pa gave me independence and confidence in everyday situations. Our days were varied, spanning from a continence clinic to afternoon tea at Harrods. There were tears and laughter, generally a drama, always a list and a mutual appreciation of hydrangeas, fashion, food and social media.
Well, in a nutshell initially I did think this was a disaster and there was no seeing the wood from the trees. Emotionally I had never dealt with anything like this and I really didn’t know how to feel. You open your circle of trust to someone who sees your best times and your worst but still it’s a working relationship.
At the end of the day it is absolutely true that it is always better to have loved and to lose rather than never to have loved at all. Maybe a little over the top but you get the jist.
I think my pa’s departing words summed up this relationship when it works well; “it has been great working with you, not always easy but fun”.
I did initially struggle with the not always easy part but I’m taking it as a compliment. Easy would have been boring!