HAPPY NEW YEAR !... CAN I START AGAIN?

January is the same every year. No money , nothing to look forward to, dark nights, grey days etc etc. But people every where tend to make the same resolutions, new year new me, starting the gym, stopping smoking, going on a diet and my personal favorite, this year will be better.... well am still waiting. I have decided to put January as a trail and the New Year for me doesn't start until February,
( knowing my luck though this will persist until June or something and I sill be putting the previous 5 month as "just a trail").

As soon as the clock chimed midnight on the 31st it all went to pot.
Dad kicked off.
Stress levels through the roof
Arguments
Health issues escalated
And I ended up missing a deadline for the first time ever !

Dad was refusing his carers which resulted in more arguments between him and my sister, leading to my sister being more stressed out. On top of this he was forgetting to pay his bills becoming more and more in arrears with his electric and gas. He was refusing any form of personal care or hot food and decided to rip the telecare monitor out.

Thankfully I have managed to get his social worker to do a review of the services and he has agreed to paying his bills by direct debit which am arranging for him, the telecare has been reconnected ( although he is still refusing to wear the call button, but small steps.) and he has agreed to keep the carers for the morning and night who will help him with the porridge for breakfast and a sandwich for his supper. Still not winning on the personal care front but I am grateful for the small things at the moment. The one thing through out this that has really annoyed the hell out of me is the way that so called "care professionals" talk to the elderly, vulnerable and disabled. I noticed when she was talking it wasn't too my dad but at my dad, which I thought was horrendous and extremely disrespectful. He may have dementia but he is still a person. Whilst she was talking about him to his partner or to me it was if he wasn't in the room. His whole body language was sad, defeatist as if to say " I may as well not be here, no one listens to me". That got me thinking about how people talk to me. When am in the wheelchair, which fair enough is most of the time now, I get talked at or instead of asking me a question they ask who ever is pushing me, as if am invisible There is also a difference from when am in the wheelchair and out of it. I don't get talked at but I do get talked down to, as if because my legs are missing somehow this included my intelligence and being to understand anything. Talking to my sister the other night on the phone and she mentioned something similar. If her partner mentions that she has had a brain tumor or surgery people treat/talk to her differently .
Why?
Is this just lack of training on behalf of the professionals, or do they just become so worn down by seeing the same thing day in and day out that it is robotic and automatic? Is it just human nature to look down on the infirm and the disabled, see them some how as inferior, less then human. Is it a simple case that evolution dictates that we over look these people or try less as there is no gain, the genetics are faulty therefore we are over looked? ( see, told you I was studying psychology).

The cardiologist went well I thought. Heart trace was normal and no sign of a murmur and he is pretty certain that it is nothing linked to my talipes, ( people born with talipes can sometimes also have muscle issues in their legs, hip issues and/ or heart defects/issues). However it could be something called egtopic heartbeats or A.F ( arterial fibrillation?). So to rule anything out I have to have three tests carried out. One is a heart monitor for 72 hours, a echo gram of the heart and a ultrasound. So its going to be a few month of waiting before we get any final results. This of course means more stress and worry.( I do sometimes wonder if this might be payback for me labeling the heart the opposite way round during my physiology exam two year ago?).

Got the pain clinic appointment coming up in a few month, but to be honest do not see the point in going. Pain clinics tend to look at alternative ways of dealing with the pain to be used in conjunction or instead of pain killers. Tried them all before, didn't work then will not work now. So its back to the docs to look at upping the meds. Can't wait to see what that leads to !

Then to top things off, just as I thought nothing else could be thrown at me this year never mind this month I received a very unexpected letter. I have to go to the Northern Centre for Cancer to have genetic screening done. well, blow me down, ( trust me I said worse then that but am trying to keep this a 12 PA). So this will mean months of tests and waiting to see what the out come is. All of this just in time to return to university after the Christmas holidays for exams and deadlines. Not sure how this is going to impact on things or if I will even complete the degree .

Watch this space!

( I swear I should write a bloody book ! only problem is it would be put in the fiction section as no one would believe it. Soap operas have more realistic story lines then my life).

THAT IN-BETWEEN STUFF

Christmas means different things to different people. To most it's supposed to be a time with family, to have fun, over eat and be jolly. What about the people it effects differently? The lonely, the people dealing with mental health issues and depression and the homeless.

Loneliness and depression effect different people in different ways. Having recently been diagnosed with depression this month and being put on anti depressants it is not something I would wish on anyone. Things just got on top of me and found it really difficult to cope. Between my health getting worse, issues with my heart, cancer scare and dealing with my dads dementia diagnosis's it all become too much and I ended taking time off university. It can be a very debilitating thing to experience. Feeling disjointed, empty, everything looks grey and muted.

The anti depressants that I have been put on for the last month are duloxetine. The main problem I am having with them is the drowsiness during the day and the limb pain. A night time is horrific. The phantom limb pain feels like a cross between pins and needles /numbness and electrical firing with small shards of glass digging into my legs. This feeling goes up from the end of my stump all the way to just below my knee.
Due to this, since starting the anti depressants I have yet to have a good full nights sleep which is draining to say the least.

I also hate to admit that I have to acknowledge how much the pain killers actually do help after running out of them this festive period. I suppose like most people I thought that I would be better off with out the pain killers, that they would be easy to give up if I wanted to because, hey what good did they do anyway? They didn't take the pain away, in fact taking smarties would have more use..so I thought. Like I said it wasn't until I went with out them all together for the last 4 days that I actually found out just how much of the pain they did dull. They might not take all of it away but they sure as hell tone it down. I felt like a junkie gagging for a fix when David came back with the prescription from the chemist.
On top of the phantom limb pain there was the bone pain, knees, elbows, back, hips and wrists with the arthritis not to mention the swelling and pain in all the joints such as fingers, neck etc, nerves, skin itching and sensitivity of the skin which is due to the Fibromyalgia...Yea fun festive season. However this didn't stop me from enjoying this Christmas, although it feels like it went really quickly. I was even brave and ventured into the town (which is unknown to me during the month of December full stop). This did not help the stress as on top of it being busy, the festive spirit in people seemed to be non existant. If you only got as tall as their waists as you where more seen as being in the way and I swear if I had to hear one more person tut behind me or loudly complain that I was in the way and they couldn't get where they wanted to be instantly, I would have went on a rolling rampage ! You would think if they had mouths big enough to complain very loudly to their shopping companions, they could open them to say "excuse me".
However in the New Year am at the chronic pain clinic and the cardiologist so lets see how that goes.

Despite all of this I have tried to stay positive and it helped that we where awarded a grant from Starbucks redcupcheer campaign. I know it sounds sad but I was so excited to find out The Psych Twins had won the money, I was bubbling with excitement.  We managed to speak to Sun FM who agreed to deliver some bags of shopping to a food bank for us on Christmas Eve. So the poor long suffering husband had to do the shop at Asda  and get the bags down to the radio station. We have also been able to help Age UK in Sunderland by putting hampers together for the New Year for them and Centre Point in Sunderland who support 16-21 year olds who are homeless, who we are going to buy things for again in the New Year.

So as life ebbs and flows around us so my life has it's usual ups and downs, and this festive period as been a variety bag of plus and minuses. The downside being the pain and depression but the up side being the good deeds we are going to be able to do for people and the help we can give through The Psych Twins. Michael and Georgia have been up for the week which was another huge plus and there are lots of things on the horizon for both The Amputee Diaries and The Psych Twins in 2016 but also more medical issues.

Stay strong and be true to yourselves and I wish all my readers a happy and safe New Year and look forward to blogging for you all in 2016 what ever it may bring my way I will make sure you are the first to know.

FULL STEAM AHEAD

Another 5 month have passed since I last put anything down for you.  Its now the beginning of December and I have now been at College for 2 1/2 months.......and I LOVE IT !!

I promise I will try to update this blog every month with what is going on in my life, difficulties I have experienced and help I have found or help I have had that worked for me.

First things first, still no further forward with getting out of the wheelchair. The cold weather is playing havoc with the arthritis and the fibromyalgia. The weight gain has slowed down but still not good, so I am personally not very happy about that. I am still experiencing issues with the stumps splitting and it is the same one that splits all the time. It has now happened twice more since my last entry. I know it is due to the legs swelling and the weight gain so the plan is to try and control this. So although we are only 23 days away from Christmas, I am going to restart the exercise routine and cut out the snacking on a night time. Yes I will indulge during the three days of the 24th 25th and 26th but that's OK as long as it is controlled, and that is going to be the key for me control. Went to a seminar about weight loss surgery which was recommended by my GP but it scared me silly, the risks where way too much and the surgeon didn't even think it would benefit me due to the Fibro, so I don't think that is an option for me. Although any one who does go through it is brave in my books.  The results are due from the sleep clinic in a few weeks so will try to update the blog with that before Christmas and still waiting for my MRI to take place.

And that is where we are up to with the health situation..now for the good bit...my life.

Can I say the best thing I ever did was leaving the rat race to go to University.

I am doing a extended degree in Psychology through Sunderland university, the first year is with Sunderland College. As a disabled student as well as a wheelchair user, the help I have had form both the college staff, lectures and the University has been outstanding! The support as well, that I have received from the DSA of student finance as well has helped me so much am extremely grateful.  They have provided me with the equipment to enable me to actively take part in all the lessons and the ability to complete work at home as well.
 I will be honest I was really worried about going to University/college as I was nervous about how much I would stick out like a sore thumb, or how much trouble it would be for others to include me,even how much disruption I would cause to the lesson. Questions such as "would i be left on my own?" "would any one want to mix with me or even do projects together?" " would I be seen as an outsider/ inconvenience?" " would people talk to me and accept me for who I am?""would I be nothing but a nuisance to people? "
Its bizarre the way you think about yourself or see your self when you are in a wheelchair or have limbs missing, its like a double whammy when it is both.  But all the worry was for nothing. Don't get me wrong not everything has ran smoothly, there are a few issues with doors for example and some kerb heights, getting under some of the desks  are a bit of a night mare and some rooms are so small , forget about a turning circle!  And if I have to leave my legs off and use my stump boards then college is just a no go. Hell I even had one of my foot rests ran over by a taxi driver..twice! guess the first time he wasn't certain he got it.  I guess there was a chance that all my fears could have been founded but it depends on how you want to few things.

 Just before starting university I was having a course of CBT (cognitive behaviour therapy), which helps you to help yourself. Basically it changes the way you few the problem or issue and how you view it, makes you challenge your view point, then gives you the tools to deal with it in future.  At first I thought it wasn't helping, but after a few sessions things changed in my head, and I realized that my view of myself and how I thought people saw me was skewed .
 Yes, OK there is going to be people out there who are ignorant gits, who do see you as an inconvenience and should just go away, but thankfully they are few and far between. They will be a certain amount of changes that will need to be made to include you, but that's OK, you are entitled to access the same as everyone else and most people understand this and are patient. Those that aren't, screw them, take longer just to annoy them lol. The point is that is their hang up/problem not yours and don't let them put their hang ups onto you, after all their not out of the race called life yet and who knows what the future holds.

I guess what am trying to say is don't let anything hold you back. If going to work or college or university is what you want to do then do it. There is support and help there to access such as the DSA (Disabled Student Access) through Student Finance, the college/University or work place itself, also if it is work connected there is the Disability Advisers at the job center and Access to Work who can help with everything form transport, office equipment and grants your employer may be entitled to, work place evaluations as well.

On a personal note things are going well. Still counting down to Florida 2014 and now Christmas. Thank god am all done. As some one who is disabled and in a wheelchair shopping in any mall, shopping centre or town centre is a bloody nightmare !. People seem to suddenly become blinkered, rude and ignorant. On line shopping is a god send.When I do have to go into town at the moment my temper seems to instantly shoot through the roof. Sick of people leaning over me, stepping back into me (although it hurts them more then me but the number of people that I have nearly had sitting on my knee...), stepping in front of me then glare at me as if it is my fault, and my personal favourite, tutting at me..for being there. All the kids are doing well and for the first  time in 10 year I was able to attend two of my children's class assembly's . What a proud mam moment that was.The eldest is doing well at University as well and cant wait to see him when he comes up for Christmas. Had some of my first assignments back and scored 80% for my Physiology report, 49% for my first maths exam, 96% for my word processing exam, 100% for my PowerPoint exam and still waiting for my result from my presentation assessment and my spread sheet exam.

My goal with this degree is to specialise in possibly CBT my self and become a Psychotherapist, all going well after my degree I will be looking to do a PHD as well. So remember if you are in a wheelchair, Amputee, friend or family member of an amputee, even if you are curious and just need answers please feel free to contact me via this blog or my face book page. All links will be put at the bottom of this entry.

https://www.facebook.com/dcphotographysunderland?ref=tn_tnmn

https://www.gov.uk/student-finance/overview

http://www.yourdsa.com/

http://www.sfengland.slc.co.uk/media/559155/sfe_dsa_1314_d.pd