Sorry it’s been a while since I’ve written anything but towards the end of last week and the start of this one I was having a tough time. I shall explain.
As a lot of you will know in November last year after having an assessment I was refused Pip by the government. After phone on them and asking them to reconsider their decision and also Margaret from headway writing a letter with regards to my disability, they still denied me saying I was able bodied. Well on Tuesday of this week to 22 March I had to go to an appeal. I had appealed the decision so I had to go through it all again but this time with a judge, a doctor and someone from higher up in social services looking at me examining me. Asking me lots of questions. But I am pleased to say and so relieved to say that at the appeal they decided that I was entitled to PiP. Finally after six long months it is finally in black and white writing that I am entitled to disability payments. It makes me sick to think the hell and the shit I have gone through to get to this point. If it had of been for headway with Margaret and Sarah taking me to the appeal how can we fill out the paperwork and being there to support us then I think I have given up. Just because someone in an office somewhere who is never seen me before has the right to dictate whether I’m allowed help or not. What I would say to anyone out there having a rough time trying to sort out Pip don’t give up. Just because they’ve turned you down at the first hurdle don’t give up if you entitled to it then you will get it.
On another note I am at the moment meant to be doing a program with Jeanette. It is called Constraint-Induced Movement Therapy or CIMT. Basically M for six hours a day I put a mitten or oven glove on my left hand and do tasks with my right hand. Initially I was very up for this but I think I should’ve waited until after appeal before agreeing to do this. So I’m sure that I get told off by Jeanette when I see her next. I am trying to do it I have done the last few days but I find it very frustrating maybe when I’m a bit further along I’ll try again but at the moment in time is very very frustrating and I get very angry. Just as well there’s no one here during the day.
I’m really looking forward to next week I got a one off payment from social services to help pay for me to have membership at the local leisure centre. Once we have got our membership then I will be up there every day either in the gym get the strength in my arm and leg or in the pool doing my own version of hydrotherapy. Because through not being able to move as much I am gaining weight. And the more weight I gain the harder it is for me to do my exercises. I’m also reading a book by Allen Carr The easy way to lose weight. Deb has read his books on giving up smoking and drinking as she hasn’t done as either since. She hasn’t smoked for three weeks and hasn’t drunk for two. I have to read each chapter 3 maybe four times because I don’t keep retain the information so I have to read it again and again and again to hopefully retain more information. At the end of the book is a hypnotherapy CD that you listen to I will let you know how I get on.
Oh my God I’m so glad to have a roof terrace. The sun is shining it’s fantastic and me and the boy sat outside and enjoy the sunshine here is a picture to prove it.
Yes I know he has a lead on but I don’t want him to fall over the edge. You see he doesn’t have the greatest sense of balance for a cat!!
Can’t wait to get the outdoors sorted with furniture, maybe some fake grass so Debs can sunbathe, some beautiful flowers and herbs and fruits so it looks beautiful and relaxing. It’s going to be absolutely amazing I’ll make sure of that.
Right I’m gonna go back out and enjoy the sunshine happy Easter everyone.
Being a survivor of a TBI (Traumatic Brain Injury), and speaking to other survivors I have noticed this. After having a TBI people are quick to advise against survivors trying tasks that they used to do with the phrase you won’t be able to do it anymore. I say this how do you know that we won’t be able to do any more? No one knows if we can do it again or not unless we try.
Ok it might be that we won’t be able to do it the way that we used to be able to, okay…..fine…..fair enough but then the help us try a different way to try and do that task. It might be that after trying all different avenues that actually we are that be able to do that task to their standards we used to, the way we used to or how are used to but at least we’ve tried it.
We didn’t ask to have a TBI mother nature, our bodies or decisions we made resulted in us getting a TBI. Don’t isolate us with defeat before we even try the first hurdle. Help us figure out a way we can try. At the same time we cannot get angry with the people that are trying to help us achieve these things. Sometimes we aren’t going to be able to do a task that are used to be able to. Because at the end of the day we have suffered a TBI. No matter how much you want to be the person you were before your TBI, you aren’t going to be that person you’re going to be another version of that person.
I’m very lucky in the fact that my partner Deb has always helped me to try tasks by myself and only stepped in if I have been struggling. She has been such a rock. She is never given up and like I said before leaves me lists of jobs to do so I can’t sit and wallow in self pity as doing that achieves nothing.
Below is the web address of called Henry Fraser who had an accident at 17 years old while on holiday and also the web address of a young girl called Beth who had a stroke at the age of 17. Finally Emma who 11yrs ago at the age of 24 suffered a stroke due complications during surgery in the land of Australia.
These people didn’t allow for their TBI to define them. A TBI will only define you if you let it and I don’t know about you people out there but i’m certainly not going to let it define me.
I started the day with some exercise again. Back down onto the floor I go. Within seconds of my knees getting the floor, my body wasn’t happy with me. I walked in my knees (with a little bit of help from the bed) from one side to the other and then backwards back (with a little more help from the bed). Next it was time for some cheaters push ups. I managed 5 before my knees started hurting.
So time to ungracefully get off the floor.
Now back on the bed. Ok let’s start with a bit of mindfulness. Lying on my back eyes closed, then I move my left foot around and try to feel what muscles are used for different angles. Keeping my eyes closed I then switch off all the muscles in my right leg and then try to connect the muscles I want to move my right foot. When I get to a nerve blockage then that is where I engage the mindfulness to start to build those bridges. Mindfulness is an important part of my rehab. 90% of my recovery comes from the brain, connecting the nerves and reminding it the I have limbs on my right side.
Now time to move some limbs. So let’s do some pelvic tilts. Then some bridging and then add in pushing through my right side more than my left (it’s good for the stomach and bum too). Knees bent I then done some knees twists lowering my legs from side to side. A bit of knee hugging. Ok enough leg love now time for some arm love. Guide with my left arm I got my right arm up and then I took my left arm away. Ok now keeping control reaching up as far as possible. Giving my shoulder a stretch. Then when I stretched again I tried to turn my wrist so I could see my palm. A couple were good but then communication was lost and after a few attempts at establishing the connection again I decided to change activities. Arm back in the air and now I had to control it to touch my lips and then straight up again. I’m slowly getting better control of my arm and it’s a great feeling to have. I just need to use mindfulness on my hand/wrist like I do on my foot/ankle.
Up and breakfast. After Deb picked out some units so we could create an office area in the spare room. So Deb went to Argos and I done the washing up. This is where I use the mindfulness. Completely focusing on holding a mug, plate, bowl, cutlery in my right hand while I wash it out of my left. It helps in re-establishing function in my hand. It it gets harder the more things I have to wash out but that’s only because my brain is having to make that connection and having to work hard and doesn’t want to it want to take the easy option. I think that is a another battle altogether. Are you prepared to battle with your brain to get things to connect again or are you just going to take the easy option?
Sarah (Headway) came to see me today. We had a catch up and then I was given a cognitive test to see how/if there has been any improvement. There has been some which is very good and some areas have stayed the same. Still plenty to improve on though.
Deb built flat pack things while I attempted to make a cake. So cake mix, eggs, oil, a hand whisk and 1.5 armed Claire……..what could go wrong? As it turns out not much. There was a bit of cake mix splattered here and there but that was to be expected. I will take a pic and put it up on here. I will also do the same with the new office area.
Deb parents came over this afternoon. Deb and David went to get the bits to finish of the kitchen island and Kath and me watched tv. The returned empty handed as the cutting machine in wickes was broken but they knew exactly what they will be going back to get. So we all had a lovely dinner of pulled pork, chicken legs, salad and new potatoes all cooked by Deb. For dessert we all had a slice of the cake.
A very productive day.
Sorry totally shattered last night to carried on this morning………quick recap someexercises completed……body isn’t happy with me!!!……
While Deb watched The Walking Dead I had a shower. Once I was dressed I went for a stroll around the block while Deb got herself all sorted (plug is blocked now) as she was going swimming with Erin later. I got back from my walk (at this time I think even the undamaged part of my brain dislikes me) and Deb couldn’t find her swimming costume. It was panic central. I said I would help to look for it (yep body super unhappy now). I found the costume!! Body is liking me slightly as it enjoys the glory.
We get to Becs and Erin is excited to be going swimming. We all get in the car and Erin has a bit of a meltdown as she has to take her frozen backpack off to sit in her car seat (I know I shouldn’t laugh but it happened every time she has to get back into the car as the day goes on it was a little bit funny). Becs and I sat in the viewing gallery well Debbie and Erin went to the parent and toddler group. Deb is really good with Erin in the pool. They worked well together and although they didn’t follow instruction completely (bearing in mind she’s only two years old) they really very well.
After we went and had a look at some sofas does, just small two seater sofa bed and the prices are astronomical so one that one is kind of on hold at this moment in time. Becs got herself and emergency doctor’s appointment because she has really really bad chest so myself and Deb we looked after Erin can also help to tidy up from the party on Saturday. Becs has got some drugs to take as she has been diagnosed with bronchitis. The poor girl.
Got home and my body was shattered. Watched a film relaxed and tried to write my blog but failed. So now it’s finished for yesterday 7th.
Woke at 6:30am feeling fully refreshed. I slept really well last night all thanks Sarah’s massage.
So let’s kick butt. Started the day by gracefully sliding off the bed onto the floor. Lets attempt some walking on my knees to help strengthen my hips. Then cheaters push ups to build strength in my shoulder. Some leaning on each side to build strength (plus if I fall over the drop isn’t far). Today when I got up off the floor I looked like I the old days after a night out. Clinging onto the bed for dear life, while trying to get my brain and legs to communicate. By the time I was standing I was in the stage of hangover……..you know the stage where your head is aching and your thinking to your self ‘well it was a good idea at the time…..but I’m not doing that again!!’. Only thing is that I can’t do that……everyday is hangover day. Ok then it was time for a cuppa and to recharge the batteries again. Cuppa drank it was now time to go back to bed…..night! I wish. Now it was time for some more exercise to be done. While lying on my back I was pushing my right arm up to the ceiling, then lowering it gently, then instead of lowering it back down I put hand to forehead then back up. Knees in bent position and arms by my side, concentrated on keeping knee in position no allowing it to move in anyway. Some hip raises, pelvic tilts…….body is now not happy with me.
4th we went over to see Bec and the little monkey that is Erin. Nigel was there too so it was nice to catch up with him too. Bec was going the cakes for Erin’s birthday party tomorrow so I tried to help while Deb and Nigel entertained Erin.
If anyone out there is reading this, who is going through the same as me and slowly regaining the use of limbs. Do you have small children, nieces, nephews or grandchildren? Do your friends? I ask because I find that being around Erin and/or Jess (great-nieces aged 2 & 4) they don’t look at me as having a disability. Instead they pass things to my right hand, try and get me to dance (I couldn’t dance before this happened and sure as hell cant at this moment in time). They don’t care and that gives me motivation. They don’t judge try just try and encourage me to.
Spoke to my mum and she is all good. It’s the weekend people. I hope there isn’t too many hangovers tomorrow.
5th Graham (Deb brother) came over to watch the North London grudge match Tottenham v Arsenal. I’m a Gunners fan and he is Spurs…..well someone has to be ha ha just kidding Graham. Was a good match Arsenal were in front then Coquelin made a pointless and stupid tackle that got him sent off…….plank!! Spurs scored twice in the space of about 5mins to go ahead but we fought back with 10men and got an equaliser. 2-2 final score. (I could this as a job match reporting).
After the match we went over to Becs again for Erin’s birthday party. Saw little Jess too. I pigged out on cakes and felt a bit sick. It was lovely to catch up with people.
We got home and I was in bed by half 9 I was proper shattered from the day. A lot of brain energy used.
6th Mothers Day I sent my card on Friday 1st class too, no scrimping, and it still didn’t get there in time! Deb went with her dad to her nan’s grave to plant some new flowers and give it a tidy up and weed it. I sat down with a cuppa and called my mum and had a little chat with her. She is such a strong woman.
In the evening Kath, Sarah & Becs came round. Becs done my nails. It’s so weird when she uses the buffer, it’s sends my nerves crazy. I closed my eyes to see if could feel what finger she was working on by the sensation I was getting. I got it wrong just like I did when I was back home with family and played a guessing game with Maddie. It’s hard now but it will get better with time. Sarah gave massages to each of us, creating individual oils us. I laid on the bed for mine as I wasn’t confident that I would be able to get on to my back on her massage table. It was a wise move as my right arm got stuck, I couldn’t move it, Sarah had to move it for me. I recommend a massage to anyone and I recommend it if you aren’t very/not mobile, it helps circulate the blood. Sarah was surprised at how cold my calf was. I felt totally relaxed after infact so relaxed that I was asleep by 10pm.
I’m still learning what has changed in the hard wiring of my brain.
My emotions are all over the place. Situations affect me differently now. For example if I was going to a meeting, going to a new destination, had an assessment or waiting on news, Claire v1.0 would put it to one side and function normally. Whereas Claire v2.0 malfunctions, concentration struggles, stutter takes over, the vocabulary I do have fuck off out the window, I randomly cry and fear hugs me so tight. In the next breath it’s all stored away and some kind of normality resumes. Then it repeats itself.
It’s so frustrating when it malfunctions. Because I then become frustrated even more. A simple task, whether it’s one that I achieved six months ago, four weeks ago, last week or yesterday, I all of a sudden can’t do. It’s like the little people controlling that certain area at that time hit the fuck it button and then literally fucked off!! Then because they hit the button another area of little people think ‘well they aren’t working so we aren’t. Hit the button folks we are out of here’
I hate these times. Think of it like a house of cards. Sometimes I can calm myself down, maybe only loose the top few. With patients put them back in place and all is good. Other times everything falls to the ground. The house of cards is flat, I’ve got to start from scratch and build that house again.