6th Jan 2016

I’m really tired this morning. I woke up when Deb left for work. So I have been awake since 6am. It’s really foggy outside today. I am not in the mood to exercise. I just want to stay under the covers thanks. 

Sarah an OT with Headway (www.headway-herts.org.uk) came to see me today. Headway Hertfordshire works closely with people who have a brain injury, their carers and families. Helping to erase social isolation, improve health and wellbeing and give carers a break. They aim to raise awareness with local groups, professionals, statutory authorities, charities and others through presentations, talks and face to face meetings. She is such a scream. I have been working with Sarah since Oct 2015. Every fortnight I go to a group called Habit which is devised by Headway and help with the cognitive recovery of the brain. If it hadn’t been for them I don’t believe I would be as social as I am now, and if it hadn’t been for Sarah and one of the Volunteers called Margret I would been fighting for my right to PiP (personal indepenant payment). 

Trying to get any kind of benefits has been such a struggle. When I 1st applied for PiP we (I say we but it was Deb who done all the writing) filled in the 40page booklet, attached all my medical and sent it off on 2nd Oct. Middle of Nov I went of an assessment with a Physio of their choice. All that info was then given to a being sitting in an office, who had not seen me physically with their on eyes, to then decide that I wasn’t entitled to anything. Headway have helped me to appeal the decision, so watch this space. Also waiting for a form so I can apply for ESA, but that all I am entitled to apply for.

I am so disgusted with our system. Because Deb works over 26hrs a week I am not entitled to any other benefits. Deb isn’t entitled to any kind of carers allowance because she works to hard. So basically even though I have been in full time employment since I was 19yrs old and am now in the situation. Deb works 48hrs a week and now has to do overtime to cover my share of the bills and anything that I might need. The system makes me sick. 

So the afternoon was really shit. I spent it tying to things of what I could do as a job to take the financial burden off Deb. How I could get better faster to get back to work sooner. 

Deb got home from work and I cried and got all worked up. She calmed me down and said that the ultimate goals was me getting back to full health, and that we have to wait to see about the PiP.

Deb is such a strong, methodical woman. I am so lucky to have her in my life.

Night all 💋

5th Jan 2016

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Had a good 12 hrs sleep last night. For the first time this year I actually went to bed when I was tired. I feel pretty good this morning. Also I have remembered (well done me. Brain is back on side. More proof that I must give into my tiredness) to jot things down as I remember them. 

Today’s first thing exercises went pretty well. It turns out that good sleep = good connections. Also the sun was shining which helps a lot. It was a bit of a challenge to concentrate on the moves as Asbo (my black & white furball sidekick) wanted me to get up and give him my full attention. Honestly any of my friends who mention that they are thinking of having children, I am going to give them Asbo for a week. Once I had finished my exercise, I got up and got to the kitchen to make some breakfast (Asbo still in good vocal spirit). Once breakfast was made I did entertain the furball and it was for all of 20mins before he was bored and pissed off back to bed!! 

I had OT today with Jeanette. She has been my OT since I left Danesbury. It was a good session today. Jeanette liked the blog and said that it was a good, positive thing to be doing. We spoke about how I have changed my medication and how that has helped me. I explained the small movements I go with my hand while watching tv which she said was good. Jeanette then got me to lay on the bed and demonstrate the exercises that I do in the morning. She added some new ideas into it. For example when lying there holding my arm up, do it for 6sec and then rest. Do this 10times and then next week increase to 8secs. Do this so that I then actually notice the improvement. Also Jeanette mentioned Mindfulness techniques to help. It’s certainly interested me so I am going to look into it further. Finally we chose a couple of goals for me to achieve in the Upper Limb group that I will be joining next week. We only picked a couple as at the moment I have such a varied level of extension and contraction in my arm, we thought it best not to complicate things too much. 

It’s been a really good evening. I’ve been writing my blog and Deb chilled reading a book. We had a good catch up on how our days have been, and after dinner had a farting competition. I’m at a slight disadvantage as I can’t get out of the way quick enough, especially trying to get up off the sofa. I got my own back though. 

I would give today 8/10. Laters 💋

4th Jan 2016

I had loads of things to write today. One teeny tiny detail I forgot and that it………(drum roll please…….)……….to jot them down as the day went on. I bloody forgot to write them down. 

The day started with Deb waking up at sparrow fart o’clock. So she went and watched The Hobbit (part 3. The something of smog). I dozed and then she came in with a cuppa tea and then we planned the jobs we would get done today before she went back to work.

In a bid to get my out of bed my job was to strip the bed and put clean duvet set on. This is good therapy for my right arm and my mood control (well that’s what I keep telling myself). I get in such a state with it. It was around 09:00 that I started and it was around 10:00 that I finished. That’s a workout and a half to start the day. That is including getting Deb to put on the sheet because the mattress is too heavy for me to pick up at this moment in time. 

I went into the kitchen area and done some leg work. It’s the right height so I can’t cheat. Some squats, both legs and also just the right leg, and some stretches.

After Deb had finished the paperwork we planned our evening meals for the week and then went food shopping. Deb only allows me to go shopping with her as it is exercise for me. Before this happened I never used to go. To be fair I’m only allowed to go now because I use the trolley as a walking aid and therefore am unable to add extra items to the shopping list.

That’s kind of it today. I don’t really feel in a talkative mood. 

Catch you tomorrow 💋

3rd Jan 2016

I woke today feeling sad. All by myself as Debs had the Smile High Club gig yesterday and then stayed at a friends. I wasn’t sad that she went because I brought her the ticket, and she needed to escape life for a bit. You see for the past 7months her life has been work or looking after me, she hasn’t had any Debs time and she needed that. I woke up sad because I missed out. A few friends were going so it would have been good to catch up but at the same time it wasn’t the best location/surrounding for me. Also then Debs wouldn’t have been able to go crazy as she would’ve have been too concerned over if I was ok. And the whole point of getting her the ticket was so she could go crazy.

I don’t thank that my mood as helped by the dark, wet, weather outside.  Today is a why won’t it work day.  My shoulder and my brain weren’t co-operating either. So thought I would concentrate on my leg otherwise all valves would burst and even Hannibal wouldn’t have been brave enough to come near me. Needless to say my leg didn’t want to co-operate either. This is turning out to be a brilliant Sunday!! 

So I decided to get up and have some breakfast and try and regather myself. My brain it seems isn’t interested in co-operating at all today.  Late nights I don’t think help. So rather than throw shit fit as I call it (otherwise known as a tantrum on a major level) I got a cup of tea and sat down and watched Elemetary (a great series on sky one). It’s a modern day Sherlock Holmes it’s brilliant. Decided that best to distract myself. 

It did help I decided that I needed to out smart myself. So while watching the tv I started going some small finger movement in my hand to practice muscle control. Win! Also some shoulder movements. Win! But I have to be careful if I try to complicate the moves too much then a shit fit wouldn’t be far behind. So just a few and often is the recipe today. As I walk it seems that my hip and knee have mad a pact that the only way I am going to walk anywhere today is looking a pirate dragging their leg.  So careful consideration was needed. My physio had told me before Christmas that needed to start being more challenging to myself. Ok……hmmmmmm. Boom!! I have an idea. So holding onto the kitchen side I lift up my good leg and balance on just my right leg. It isn’t easy but nothing is. Now I bend that leg and then straighten and I achieve in getting brain, hip and knee all to play ball. Let’s add some squats in for good measure. Communication restored.

I know that my exercise hasn’t been very much today but sometimes it’s not the physical side that needs attention. Sometimes it’s the mental side, and today was a mental side. I have spent a great deal of today trying to understand the connection patten of my brain and finding ways to out smart myself to get some excercise done. My my brain was my nemesis today. It might be again tomorrow. Who knows. 

I’m of now to watch some more Elementary and then to catch up with Debs when she gets back, and hear all about Smile High. 💋

HaPpY NeW YeAr

Happy new year to everyone.

So how were the heads yesterday?? How many people swore that they were not going to drink again?? 

I know I know I’m a day late but because I decided to wave goodbye 2015 and welcome 2016 I spent most of yesterday sleeping because I forget that my body and my brain at the moment cannot survive on little sleep. So I slept yesterday which I know isn’t good for me but of the year that has been wanted to make sure I waved goodbye to it.
So needless to say it was a massive fail with regards to my physio and exercises yesterday. I am back on track today and feeling really good about moving forward and connecting the nervous between my brain and my arm and leg. My physio told me just before Christmas that if I wanted to stay in bed the next for 10 minutes in the morning then to do that I would have to do some arm exercises. It is hard.

 Trying to keep hold and control of my arm directly above me is quite a challenge. 

Trying to control my arm and bring it down to touch my nose with out giving myself a blackeye is hard. 

Bring my hand down to touch my cheek or my forehead without causing myself and injury is hard. 

Moving my hand about in the air in their figure of eight motion and not giving into the loss of muscle strength that I have so that my arm feels really heavy and the easiest option is to just give up that’s really hard. 

Laying flat on my back knees bent trying to lift my pelvis of the bed while keeping control of my knee and my hip and my right that’s hard.

Lifting my pelvis and my good leg off the bed whilr trying to use my bad leg to keep my pelvis of the bed that’s hard.

That’s only 30 minutes of exercise and that feels like 2 hours.

Also then sit and watch a TV programme while peddling on a mini excerise bike. 

Then a few squats. I could never do squats properly until now. Not that they are  perfect right now the still better than what I used to be able to do.

Called up my father-in-law today and he took me food shopping as Debbie was at her Christmas present which was a ticket to the fat boy slim is smile high club gig at Tobacco doc in London. But she conveniently decided to shout out as she left “don’t forget the cats got no food left”. Cheeky monkey! But that’s what I think is great about her she will leave me stuff to do. It’s like she sets me her own little challenges. And I do get really frustrated when I don’t achieve them. I’m sure that’s why she does it.

Even now it is really hard to understand how you can go from being fully able to do anything one-day and in an instance that has changed. For me it is a temporary thing it will all come back but it’s going to take a very long time. But it still doesn’t get any easier to understand. Like I said before I’m not depressed any more about what has happened to me because I can’t change that. For me now it is dealing with the anxiety I am sitting here practising to pick up a boat building block and my fingers won’t react how I want them to. This is where I turn into a five-year-old and keep saying why! Why can’t I pick that up! Why can’t that finger bend how I wanted to! And the answer is practice, the only way things are going to get better is if I practice. 

I must admit when I woke up in the morning and stretch on my right hand I do give the live long and prosper sign and I’m not even a fan of Star Trek. I promise one morning I will remember and I will take a photo and put it up on here. It is quite entertaining to have a little chuckle to myself.

It’s really late really should get to bed so good night.

End of the year

I was very slack and didn’t do many diary entries in the first few months of coming out of hospital. It was a very hard time for me we were living in every parents front room and don’t get me wrong I am so grateful for what they have done for us but at the time it wasn’t our own home. But now we do have our own home and now we can build a new memories. 

I had many arguments with Debbie as of what over why she decided to stay  with me when she could have just left and had a normal life and that had to put up with doing so much for me. I don’t think either of us actually really believed at how hard it was going to be. It wasn’t just the fact I’ve had the Brain injury but also that I am having to learn to use my right hand side of my body again.

Debbie’s dad David has been amazing he’s been my personal taxi service to my physio appointment my OT appointments and anywhere else that I needed to go in between. That’s really hard to deal with when you’re such an independent person but then you want to go anywhere or do anything you have to rely on someone.

I’ve had a few falls the first one was literally the next day after leaving hospital lost my balance and fell into washing pile. And Debbie’s parents having to help me up because I couldn’t do it by myself. Another one that is thanks to my adorable cute black-and-white furball Asbo the cat. I was sitting on the edge of the bed and he jumped up sat behind me and decided to throw up a hairball. My brain engaged the way it would’ve done in the past for me to get out the way so I didn’t get covered in cat sick so no sooner had I thought with myself to stand up and move I fell to the floor and quite spectacular fashion, smashed my head against the Chester draws and then sat on the floor crying uncontrollably. Debbie said it was really weird to watch she can get herself to me quick enough so she could do was watch and said it was horrible. 

But I think the biggest thing in all of this is my mood swings. I’m having to learn my brain and how to react to things all over again. It’s like being a toddler and learning how to react in different situations. Sometimes something is hilarious and I will laugh so much that I have tears but then other times I will cry doesn’t necessarily have to be a reason behind it I will just cry. The biggest one, the worst one is anger. As you grow up when things start to annoy you or someone pisses you off you learn how to control that in a manner that’s not offensive. At this moment in time I don’t get those little warning signs. It’s a case of I can be absolutely fine one minute and then something completely trivial Will just get cold in my head and that’s it I’m super angry. Remind Debbie deserves a medal because nine times out of 10 she is the one in the firing line. And that is not fair so my OT has referred me back to the psychologist to that we can get this sorted and I can learn how to control it all again. 

I now belong to a group called headway and these people are amazing. I am part of a group called habit and we meet every fortnight and it’s really nice to be around people that are going through similar to you I know what you’re going through and you don’t feel so isolated. Headway is an amazing organisation and I look forward to being able to pay the favour when I am better.

Part of the reason for me writing this blog was so that I remembered to write down how my day goes because at some point I’m going to be looking back all this and seeing all the minor and major achievements I have had. All the little dramas but I will and I am sure there will be plenty of them. And also so I can show people that there is no such word as can’t. If you got the drive and determination you can do anything. 

So today I draw a line under 2015 and I look forward to success strength and fun in 2016. 

Happy New Year to you all 😜

Back to the real world

  

 
Well it’s the end of another chapter. Danesbury’s No1 patient is leaving. I would like to say a massive thank you to all amazing staff. They are a great bunch of people who do such a fabulous job.

Thank you Abi, Ana, Paul, Kerry, Carla, Adrian, Gary, Abs, Suzie, David, Sharon, Tracy, Geraldine, Janaya, Sandra and everyone I have missed out. THANK YOU SO VERY MUCH xxxx

I am going to miss this place. The staff here are amazing and do such a fantastic job. I will never be able to thank them for the help and support they have given me and my family.

  
The first stop after leaving hospital was a to stop at the pub for a celebratory drink. It’s been a hard journey and it’s not over yet but I’m out of hospital for good now.  

We has also be successful in getting one of the flats when they are completed so that is fantastic and so for the time being we are going to live with Debs parents for the time being.