Home truths – despair settles in

It’s been a while, dad has been moved into a care home due to his dementia getting worse and then was rushed into hospital where we were told that he had bowl cancer and things amped up at university with it being the final year. Change of location as the Psychology department was moved from St Peters campus to the City campus, final assignments, exams and final dissertation.

Speaking of changing campuses the trouble this has caused for me is unbelievable.   The move to the city campus was supposed to be a smooth transition until I found out that none of the lessons I had at the Priestman building where accessible. Add that to the up and down situation with my father, who as you may remember has mixed dementia, has caused me to miss out on workshops and lectures this semester. Leaving me at a disadvantage regarding my upcoming exams.

This all ended up with me in tears yesterday trying to hand in my dissertation project book and being unable to access the building and a able bodied woman banging on the toilet door in the shopping centre telling me to  hurry up…the disabled toilet  that is, which was being used by someone in a wheelchair…me.

People really don’t think do they? I mean we are supposed to be a society of caring, responsible, intelligent and understanding people…aren’t we? No… we are not!

I personally think that we as a society and a race we are de-evolving. I have tried for years to debunk the “them” and “us” divide but am wondering if it’s true after all.

No one will ever understand what it is like to get up every day and have to ask someone else for help you just to do the smallest of things like get out of bed, put pants on or stand up. It’s not just the embarrassment but the mental anguish it causes. I hate the way I am. I don’t enjoy it. I didn’t want it. It just happened and am left with the aftermath.

Society and the government sees me as a drain on resources, an inconvenience, someone to be singled out and criticised. Scapegoat for fraud, rising unemployment figures. My peers either pity me, or blank me there are very few who support me and have stood by me throughout this, but they, no matter how had they try can never understand what it is like. I have lost count of how many friends don’t bother with me anymore, or how often am over looked when it comes to nights out or family events, it’s an inconvenience you see. Me being in a wheelchair.

I  sometimes need help to sit up, get dressed, pick up things off the table or floor, get tablets out, and cook a meal. Don’t even get me started on having a shower. I can’t do stairs and need someone to help me step off a kerb. I can’t go anywhere on my own as I need someone to push me, I can’t walk the dog, go for a walk, swim, dip my toes in the water, go in the sea, walk on the beach, feel the sand between my toes, clean my own house, get to the girls room, wear funky socks, soak in a bath or even get in a bath or feel a carpet under my feet.

I take tablets morning noon and night and then in-between. They make me gain weight and bloat me even though I barely eat I still gain weight and can’t lose it. Yes I have the odd treat but you look at me, a larger lady in a wheelchair with no legs and the automatic assumption is “who ate all the cakes, pies and biscuits” and it’s thought that the legs where lost due to being fat, over weight and diabetic. They weren't. I feel disgusted in myself, don’t worry. It has been said to me that by someone that I am the reason that they have an eating disorder….they don’t want to turn out looking like me…fat.

The disabled complain about the “disabled porn” how we shouldn’t be inspirations, bollocks to that! I hope I am an inspiration to abled or disabled people. I work hard just to do day to day stuff never mind go out, work or go to university. 

I feel dead inside.

 I have sitting in front of the telly not leaving the house unless it’s my weekly one day a week trip to the town or off to the doctors or hospital to look forward to. No one would hire me due to not being able to guarantee when I would be in. I hate the way I am, I hate the way I look, and I hate my size. “Just go on a diet” “you need to move more look for wheelchair exercise” “just go on slimming world I did “yes and you lost weight because you are more mobile than me…it’s not that simple. I wish it was.

I get up every day, some days when I don’t want to. Some days I just can’t face it but I get up. Everything you take for granted, every little thing you do, needs the utter most planning for me to do or participate in, that’s if I can.

 A day out with my family, a meal, a trip or a holiday needs to be planned to every last detail. Access, toilets, fitting through doors, getting round, getting there. I worry constantly about getting in the peoples way or blocking things or places. I worry about being an inconvenience, the embarrassment and the mental torture I put myself through. When something goes wrong or there are issues accessing 

somewhere or something it makes it worse, it’s like ramming it home, rubbing it in my face.

I just worry.

This is not what I wanted, despite what you might think. I want a life, I want my life, I miss my old life.

INSPIRATION

So I have read a lot lately about people with disabilities being other people’s inspiration.  However, this seems to be getting a lot of disabled peoples backs up. There are lots of comments along the lines of how degrading it is, how we are inspiring to others by just living our lives or patronizing it is to be told how “inspiring” they are.

Well for what it’s worth, here is my opinion on it.

I feel quite good about being some ones inspiration to be honest. If what I manage to do can help someone else, motivate them to achieve something or just to keep going. Then good. Am glad. Able bodied or not, I am happy if I guilt you into not complaining or getting up off your arse to do something. I feel elated and ecstatic if I can make just one person say “if she can do it then so can I “.

Disabilities come in different forms, some we are born with and some happen due to accidents and illness, but how ever or whatever has happened to us, it changes our lives in so many ways. I am not afraid to admit that even though I was born with a disability, unless it involved standing for long periods or walking a distance, I never really saw myself as disabled as it did not interfere with my day to day life (unless you count not being able to wear shoes from a shoe shop as my shoes had to be made by the hospital for me).

Since the last amputation however, I now consider myself disabled, as not only does it impact on my day to day living it has a major impact in all areas of my life and everything and anything I want to do. I do struggle to do things like walk around the house, make a cuppa tea, cook a meal, showering, stairs are a complete right off, nights out, shopping, hell getting into and around some shops and premises can be an Olympic sport in itself!

So, yes, if me managing to live my life, getting through the day and doing normal day to day things without help, if holding down a job or gaining a university degree when the odds are stacked against me, which makes things more difficult to do what other people take for granted, helps other people who are disabled to believe in themselves or someone who is not disabled feel more motivated to do something then that makes me happy.

THE FAST AND THE FURIOUS

Nearly at the end of March already, who would believe it. I still maintain that this year will be my year for things to work and the last two month has just been a practice run. Guess we will have to wait and see.
As you are aware if you have been following my blog ( and if you haven't why not? get reading now!), This year has not had the best of starts. However three month in and things may be slightly starting to improve.

Caught up with University work and came out with a first for my Academic Mentor presentation which was great and after my personal development meeting, found out that I might not be as screwed as I thought I was with moving on to the final year. Although if all these health issues and my dads issues had not had to be dealt with what kind of grades would I be clearing? So it is with extreme caution that I apply for my final year of finance for my degree. But what comes next? For most students this would entail a masters or PHD or perhaps getting a job, but what about some one with chronic health issues such as myself? What do I do?Well I guess that is the question isn't it. Like so many others out there in the same situation (OK I admit there are people out there who do take the piss), I really want to work, even if its part time. Here is the problem, even part time I know there will be more times spent off then in and looking at my health issues most employers will take one look at me and will pass me over nor have the time, money or patience to put up with it.
So that leaves working for myself, but what as, how? The Psych Twins was supposed to be the start of that the whole, if Mohammad can't get to the mountain then the mountain will come to Mohammed thing, but with out grants/funding and being able to get contracts its all pie in the sky, a great service I keep getting told, that is greatly needed, but no money to do what we want with it, pay ourselves a wage or hire others.

So where dose that leave me? Well back at the beginning, on ESA, unemployable despite all my skills and training, just take a look at my CV (go on take a look you will find it on my LinkedIn Profile), despite the outward appearance of a withered, useless body ( I sometimes see myself as a female "Jabba The Hut" ) there is a mine of pure knowledge, skill and enthusiasm just waiting to be tapped into. This then leads to the "what's it all for then?" phase. The point at which you relaise that you are of no use, not even to yourself. You need help at home, help to go into education and help to hold down a job (if you could actually get some one to give you a chance) and the government is slowly tearing that all away from you any way.
This then moves into the "isolation" phase. As some one who has numerous illnesses/ health issues, going out socially is not a thing. Even if I had any one who would offer me to go out socially there is the accessibility of the venue and how good or bad am feeling on the day. ( All the offers of being invited places, even by family and friends dropped off after it became apparent that to invites some one out who has to use a wheelchair 90% of the time is just to darn pesky to organize. Especially if it means that one of you have to be responsible for helping said person and good god you might have to change the venue/pub route/restaurant to make sure its accessible etc etc ...you get the picture). So if you take going to university away, I leave the house once a week with my husband...maybe to look around the shops and any drs and hospital appointments. What does that mean realistically? If am lucky I will get out once a week maybe once every two/three weeks. WOW exciting life !

This then leads into the final stage..depression. yep. What more can I say about his phase, well nothing really, its all been said before. You can't see anyway out. Nothing is going to get any better, because there is nothing you can do to make it any better. No diet, exercise regime or will power is going to change those illnesses so you can go out to work, therefore get out more socially, have money to enjoy life, get  mortgage, move up in the world etc etc. No way of being a good little citizen just like the government want you to be. So you are labeled a scrounger, a waste of space, useless and society look down on you, and the government? well they just keep taking benefits away from you making it harder and harder to function on a day to day base, telling you to "get a job" "loose weight" "exercise" "this is how to improve your life and your credit"..we know! but we can't can we no one will let us.

Money wise, am lucky my husband runs his own business which ticks along for us, so things don't effect me as much as some people I know  - disabled and non disabled. I would love to go back to work, hold down a job doing something I would enjoy, bringing home a wage and getting off benefits. I dream of getting  a mortgage and owning my own house, done out to my specification no expense spared, holiday every year never mind twice a year instead of saving for 2 year to go away for  2 weeks (meaning no treats for the kids, no weekend breaks as a couple, no date nights, no family days out, no new clothes , going no where during the summer holidays etc etc).... and yes for those out there who follow my profile on Facebook I save to go to Florida and am well aware there are people who cant afford a weekend away, I did say am lucky.......to have more of a social life with my family and  friends rather then wondering if am getting out the house for an hour or two in the next 14 days.

Who knows maybe things will turn around. Maybe funding will come in and I can finally get The Psych Twins off the ground the way I want too and make a wage that way. Maybe my health will improve and I will get a job or there is some employer out there who will let me freelance as a writer or something and come in when I can for a wage.

Maybe I will become a tv personality and be on political shows and news program or have my own show. Maybe I will become a famous author. Maybe I will get the acting offer I cant refuse because of my unique physique as an amputee. and matronly and northern..yea OK the least of the lot to come true. All I do know is that I will keep on trying, wishing and dreaming. Oh and am getting an electric wheelchair ! so bright side I get to any future Film and Comic Conventions I can play a Darlek....

......................Que Dr Who theme music.........

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.

NO NEWS IS GOOD NEWS OR SO THEY SAY

Things have been a little hectic since going back to university.

Every thing going well, lots of reading of psychology books as you would expect, assignments already starting to come out of the woodwork and this year we have a new support worker, Gail. There was no issues getting the taxis sorted back out and things seem to be running smoothly at uni for a change although debating the psychology of religion is interesting. However I cant say that in other areas of my life.

My farther, since being diagnosed with mixed dementia just before I returned to uni, has received no help what so ever. In fact the social worker that was assigned to him decided that because she saw dishes in the sink and assumed (wrongly) that meant he had eaten that day (in fact those dishes had been there for a number of days, that she saw no rubbish (because my sister had cleaned the house just days before, which we told her) and she could not smell any bodily smells ( will leave that one to your imagination), then he was capable of making his own decisions. This even though the CPN who was there knew the consultant from the Dementia clinic had declared that just looking at him any one could tell he was "not all there ". Lovely man (insert sarcasm here). Don't even get me started on the way he treat and talked to my dad.

So we are slowly watching his money going missing, his house going to wrack and ruin and him not changing his clothes or eating because we can not get help for him. This all due to this social workers recommendations on him being capable.

So that on top of uni work. Then you need to add on my health getting worse.

 With the onset of the colder weather now in the UK ,my joints and mobility are getting worse and so are my stumps. Already on paracetamol, Nepfom and Tramadol. So after ringing the doctors I was put on Oramorph 5 - 10ml every four hours. Not a good thing for uni. Have been taking 2.5 ml in the hope that I could get away with that. Nope. Needed to up it to 5 ml a couple of days ago. This made university very interesting yesterday. We where doing a spot on visual attention, so here's me high on medication trying to count how many Blues are in the song Blue by Eiffel 64 at the same time trying to find Wally.......I think I was an outlier....it was a very trippy effect to say the least but the lecture found it amusing to say the least. Today I have woke up with a swollen  right stump and purple spots all over the bottom of my stump. Putting the liner on is like a million shards of glass in my skin and that's before putting weight through the leg. My initial thought is a reaction to the Morphine due to upping the dose. So off I come. The pain is unbearable, but am grinning through it like I always do, hoping that tomorrow its manageable and I can get into uni. I have an assessment on the 4th of November for an electric wheelchair, which if I get it will make my life so much easier giving me so much more independence.

So now we have uni work, dad with dementia and pain increase. Then you need to add the event in the mix.

Last Saturday we held a promotion at The Bridges in Sunderland . This was to promote the Halloween Monster Masquerade Ball on the 31st at the Stadium of Light, but also to promote what The Psych Twins do.
The response was fantastic and in just little over a week we have had 700 new visitors to the site. We are thrilled. The final preparations are in place now, balloons for the tables booked, decorations for the room ordered and costumes bought. I am going as Cruela De Vile. I have even bought a Dalmatian cuddly toy to hold and stroke so am going to look like Blowfelt from James Bond....just with no legs, well plastic legs..you know what I mean.

For information on our event go to https://www.facebook.com/events/417935758373799/

Facebook page is https://www.facebook.com/psychtwinsfundraising

Twitter https://twitter.com/psychtwins

Website http://thepsychtwins.bravesites.com/

If you would like to donate to The Psych Twins http://www.jumblebee.co.uk/post/trvDZTEUem

GETTING OLD

Another busy couple of weeks. The Psych Twins website is now up and running and we are adding to it all the time so you might want to take a look. psychtwins.bravesites.com and you can also find us on Facebook and twitter.

It was my birthday on the 21st ( don't ask the age), and was spoilt rotten lots of lovely presents and both dinner and tea bought for me. On the downside ended up in the emergency dentist to be told that I have at least one abscess on my broken back tooth. The pain was agony. Three days of no sleep and constant pain left me losing time and no chance to revise for my last exam on Wednesday. But sitting in the dentist it came to mind how it would work regarding me being in a wheelchair? Once in the dentists surgery he didn't even ask if I could get out of the wheelchair he just told me to get in the dentist chair. No help, no we can work round this nothing. What would have happened if I had said that I couldn't?Another issue I came across was accessibility to the premises. Most of the emergency dentists that where recommended to me by the 111 service all had stairs up into or down into a sub level business with no disability entrance.There was also no access to bathroom or surgery.
I ended up leaving with  a prescription for antibiotics and told to have the tooth removed. No I am having the same issue trying to find a dentist to register with who can fit me in sooner rather then later that has access to the building.

Better news on my birthday was the fact that Tyler had his review at hospital over his legs. About a year ago he was diagnosed with Tibia Torshin. We where told that he would be given innersoles to try and help correct the condition but if not then it could result in having to have both his legs broken, Well after his review we where told that the surgeon would rather wait until Tyler is old enough to make his own decisions about whether or not he wanted correction surgery . It still may correct itself, but it is not a genetic throwback from my Talipes which was what I was really worried about. It turns out that it is a condition that most sprinters suffer from. It was at this point the penny dropped and we knew  that it was part of Tylers constant running backwards and forwards he does on a night time due to his ASD.

Saturday although in a haze of pain and painkillers it was a special day. Annabelle's prom. She went to the spa to have her nails and hair done then a good friend of mine did us a huge favor and traveled over to the house to professionally do her make up. She looked so Grown up !!!
She wore the dress that we got her last year from Florida and her hairband we bought her from the Chinese pavilion at Epcot in Disney. finished off with black shoes and handbag and one of my costume jewelry necklaces and she looked amazing. Although am not too sure I like the idea of my little girl being all grown up. David dropped her off and he was like a proud peacock showing off his beautiful daughter, bragging to anyone who would listen.

One of the many things I miss due to my health conditions are the little things the most. Like taking my daughters shopping or having mother daughter meals and trips away, walking on the beach feeling the sand under my feet or going in the sea. That is just to name a few.I ended up back at the doctors as well due to the Tramadol and Paracetamol no longer having an effect on the pain. I have ended up with also being put on Nefopam, a painkiller am not familiar with on top of the rest to see if that helps..it doesn't. The doctors told me that I am going to have to face up to the hard truth, that sooner rather then later am going to end up on the harder drugs for the pain. Things like the Oxycontin, Zoramorph and Oramorph. I will keep on going and fighting until I no longer can before I move onto these drugs full time. Because once I do any dreams of trying to work are gone.
I am having an ultra sound done on my armpit as well as a lump has been found and unfortunately there is a terrible history of Cancer amongst the females on my mothers side. Both my sister and niece have been diagnosed with cancer of the cervix and breast and now my niece is awaiting news about a shadow that has been found on her bladder. As usual still waiting for an ultra sound on the stumps but my appointment for my neck and back is through for the 24th of June, not that I need to be told I have anything else wrong with me !!

To end on a positive note school is out! I have completed my final exam of this year and have now broke up from University for the summer. Four and a half month of doing what I want..kind of. Pleased to say I passed my last media presentation so fingers crossed it will be a pass and proceed in July.

LINKS THAT MIGHT BE HELPFUL:

http://bluebirdcare.ie/2015/05/15/transportation-for-older-people-and-disabled-drivers/

http://www.hypnotherapy-directory.org.uk/


Any help or questions please feel free to contact me here, The Psychtwins on Facebook  https://www.facebook.com/psychtwinsfundraising?ref=tn_tnmn

or at through the website link above.

PREPARATIONS , BIRTHDAYS AND COMIC CONS

I am trying to improve the blog so that as well as detailing my life, trials and tribulations being an amputee and in a wheelchair, but also as a source of information, help and advice.

I would like to think that if just one person found an answer to a question or reassurance that life goes on and they don't need to think of themselves as a burden on family then  I have done something right.

We are coming to the end of our first year on University campus but my 2nd year of a 4 year extended degree in Psychology. It has had its ups and downs but has definitely been an experience that am glad I had and looking forward to next year.

The support has been brilliant from Student Finance, the disability team at University and from the staff themselves. But we are now coming up to exam time. eeek ! But do not fear, every thing has been put in place for me to succeed , well as far as not worrying about access etc I still have to sit and pass the damn things.

I have received my own timetable, been given extra time to complete exams a long with a separate room and invigilator, PC and some one to scribe for me if needed. This is brilliant as it takes off any added worry or pressure that this could have caused for me. Now just need to try and stay calm and sit the exams in May. Wish me luck.

Last month I took part in a number of things after making a promise to myself to have as many new experiences as possible. Never let anyone tell you you cannot do something because you are disabled or in a wheelchair.

First off I took place in raising money for Student Minds through a group at university called Thinking Ahead.  This involved doing a couple of radio interviews with Sun FM. I set a target of  raising  £100 , once reached then I would shave my head.Well as you can see from the photo the target was not just reached but smashed with a grand total of approx £182 raised ! The head shave took place in The Prospect building at University where we offered people the chance to take a chunk of hair for a donation. After an hour the head was shaved.

If you wish to donate the link is https://mydonate.bt.com/fundraisers/jenniferclark1

Thinking Ahead are on Facebook https://www.facebook.com/thinkingaheadsunderland?fref=ts

We also celebrated two birthdays in the house. Toyah turned five and Eden turned nine. Unfortunately did not make Toyah's birthday party due to ill health , but from all reports it was a success and Elsa stole the show.

Eden's was held at the Sandcastle Pub in there fun house. Access for myself was fine with no issues being able to get in or out of the building or the fun house. The children all had a great time and what was even better was there was no mess for me to clean up. So a win win situation.

My other big outing during March was to Newcastle Comic Con which was organised by Showmasters. We bought Early bird tickets for both the Saturday and Sunday. We all got dressed up and on the Saturday I went as Maleficent.

 The attendants on the car park where helpful and checked the blue badge before directing us to disabled parking then informed us that it was free. Bouns ! Access to the building was on the level and no issues getting in . Although after the event I found out that on production of my DLA letter and Davids Carers letter he could have got in for free. The website does not state this any where and having emailed them several times about other things they are really bad at replying. As yet am still waiting for reply's on my questions !

The foyer was not crowded and no one give me a second look, well to be fair with all the Green Arrows, Storm Troopers , Darth Vader's etc I guess I wouldn't.

Being honest I was concerned about how things would work for me accessing stalls , autographs and photo shoots. But apart from the odd hiccup it was nothing to worry about and there was other people with wheelchairs etc present as well.

Showmasters had handled things really well considering how badly things could have gone and I was impressed. It made my first Comic Con very enjoyable and wanting me to do more. The staff where helpful regarding access to signing and  the photo ops and the stars themselves went out of their way to make sure I got the same opportunity as the other fans. Finding the disabled toilets at the venue proved a challenge

so ended up using the normal toilets and getting out of the wheelchair to use the cubicle. Not great if that is not an option. Getting around was slow as the venue was not large enough for what they had in there and the main worry was Anna crashing me into stalls, autograph tables (which she did twice) and taking peoples ankles out. It also made shopping and looking at the stalls very difficult. But we waited until it had cleared out a bit by 4 pm and accessing the stalls at that point and being able to get around was fine, much easier. If you don't like crowds or being hemmed in with the threat of going into some one or them falling on you I would  wait until it has quieted down for the shopping.

The only problem with that is that the traders bring limited stock with them so you may miss the chance of getting that certain something.

Unfortunately due to the long day and excitement my fibro flared up and stopped me from going on the Sunday. But I must have made such an impression as Garret Wang ( ensign Kim from voyager) saw Anna and asked where I was .....not sure if that was good or not as not certain whether it meant I made a good impression or the wrong type of impression !

So something I want to try again. Thinking about heading down to London Comic Con at the Olympia, Again not certain of their access at the venue for wheelchair users as waiting on Showmasters replying to my email. But lets see what happens. Hotels are proving  difficult as a couple of them that are near the exhibition center are  not disabled accessible, nor  do they have accessible bathrooms.

Transport is also proving an issue as we are trying not to take the car due to the long drive and the price of parking. We are trying to stay as near as possible so we don't have the nightmare of trying to access public transport  such as the tube !
Also off down to Manchester in May with Anna as  she is going to see Tyler Oakley???? Which means we are taking her down and having an over night stop down there to do some shopping. So this should also prove to be an interesting experience. I have to admit these two next trips will be very much taking me out of my comfort zone and I have many concerns especially about how things will work for access, transport and accommodation.


Another thing I am trying to put into place is a fundraising site called The Psych Twins. This is to raise money and awareness for local North East Charities. In October we are going to be holding a Monster Masquerade ball to raise funds for Sunderland Carers Center. We have a comedian and burlesque act . meal. raffell and disco all being held at the Stadium of Light. We have Johnny Depp's official stand in Simon Newton attending as well as a special guest to be announced nearer the time.

https://www.facebook.com/psychtwinsfundraising?ref=hl

But on top of this I am currently carrying out research on services pre and post op for amputees .  I believe that not enough is being done with regards to advice, support and therapy.
Once the research has been carried out my colleague and I are hoping to set up a center where we will be able to provide this along with a web page containing advice and on line or telephone counselling.

If you can spare five minutes and are an amputee please follow the link and complete the survey.

https://surveyplanet.com/5509dfbe1945880c2c5b4701

If you do need to talk , advice or concerns you can contact me through twitter or Facebook

https://www.facebook.com/theamputeediaries

https://twitter.com/greebo89

FUTURE PROOFING

Its not long now till the end of my first year on a Degree course. It has been enjoyable and at times frustrating, sometimes down right annoying, but the main thing is how far I have come as a person.

So whilst revising for or last two exams and awaiting the final results for our assignments we organised a visit to St Peters Campus and the DSA team based at The Gateway. This is something I would highly recommend for any one thinking of starting a University course anywhere, Disabled or not. It proved to be the best thing we did. For me it was the peace of mind knowing where I was going to be, knowing what to expect as this helped with my stress and anxiety issues. As well as that it was a dry run for getting around the campus with the wheelchair, fitting into lecture halls and class rooms and through doors. Again this helps with knowing what to expect so it is not a nasty surprise or embarrassment come September. For Jo it was the peace of mind knowing what was going to be expected of us , time tabling for child care and mental preparation.

 We met the head of the module who was really happy to answer any questions we had, talk us through the program and made sure we where comfortable. putting us at our ease.

 The space was incredible and so where the facilities and Jo and I have already sussed out the best root from the library to the Costa coffee shop and the canteen :). The meeting with the DSA team was brilliant as well. Again if you are thinking of attending college or University get in touch with these people. I didn't even realise how much help was available to me during my time at University. Everything from transport to get there, a helper around campus, to access to class notes in advance, rest breaks and support put in place for field trips and exams.

The library 

Looking around the campus the excitement grew and now am bouncing with the idea of starting and feel that September cant hurry up fast enough now for two reasons! I would never have thought 12 month ago that I would be able to do this or even get this far. My health was getting worse (still is but we are working on that), I had to leave work, the amputation hadn't gone according to plan and had not given me the freedom I had hoped and wished for, I was not in a good place mentally with regards to depression, body image and self confidence.

Now here I am, all assignments completed and handed in 3 weeks early, getting ready to sit my year end exams, preparing for moving to campus, looking at joining societies and trying to organize a fund raising event where I will have to be in the public arena and on display deliberately looking silly!(more news of this to follow).

my view of the lecture

Main lecture hall, my view from where I will be sat

This is the beautiful view from the canteen.
 

So this moves us on to my health and weight issues. Recently I decided that I needed to up the game with these two things. So this has taken the form of making sure I do my physio every day and I have added to this a bastardized version of step aerobics using the first step of my stairs and stepping on and off it . I currently can manage 10 of these before it hurts. Coupled with this I have started to try walking to the sitting room, bedroom and toilet with out the aid of my crutches. Its hair raising at times but I can do it...just. I have 141 days left before I head of to Florida and I want to be more mobile to do the things I couldn't do 2 year ago. I also want to try and improve my health so that I can get rid of the CPAP machine and ease the pain from the fibro and arthritis. This is not going to be easy and I know this, but its something I have to at least try other wise I will feel like a failure. I have posted a picture along with a video of me walking, this is a big step for me doing this mentally considering how embarrassed I feel and how much of a low opinion and low self esteem  I have of myself. This is a testimonial of how far I have come so far and the journey still ahead. Wish me luck !!!

This is me now at just over 21st

this is me showing how I walk at the moment and the size I am right now

THE END OF THE ACADEMIC YEAR

This time at college has really flown by. In less than 5 weeks I will come to the end of my first year on my Extended Degree in Psychology. September will see me moving onto campus at St Peters and playing with the big boys.

I remember thinking that I would never understand any thing they where on about in Research Methods, IT or Algebra and Stats. Now look at me I am heading towards a first, Still don't understand but can do Algebra..if forced too!( still want to know why the letters, its wrong, so wrong, what do they stand for Apple, X for Xray? is it some secret mathematical Morse code or something?) Getting ready to sit a Stats exam and created, implemented and wrote a 20 page report on an experiment to do with memory for Research Methods with Joanne ( although must remember to call them "participants" and not "victims").

All joking aside, the last 9 month has been a hell of a ride for me and helped me develop, grow and become comfortable with who I am and where am at in my life. The best thing I ever did was leave the rat race and I now know that being in a wheelchair does not stop you from living your life to the full. Its not been an easy lesson and not every thing at college has been smooth. I still feel that they have a lot of kinks to iron out not just for disabled students but for everyone who takes a HE course as part of the University.

Friday sees me going across to the University for a visit to campus so I can get an idea of what faces me across their and to iron out any bumps. Also meeting with the staff and the DSA team who will help me with any needs I have. Promise to bring back photos ! Am thinking of taking on a more active role at University as well, getting more involved in things on campus. So I am applying to be a BPS student rep as well as looking at raising money/awareness for mental health with Jo by doing a lot of crazy and fun things during fresher week in September and last week of College( need to get permission first and work things out). But watch this space.

Not going to even mention my weight as am sulking about it and not speaking to my body ! but when I get out of my strop I will give you an update.

To be fair these last couple of weeks have been hard. I am currently fighting off an infection under my arm where an abscess burst and its making me feel rather ill, the sleep apnea seems to be getting worse, so too the arthritis and am swelling up like a balloon due to the fibro. So i think I can forgive myself a little here for not being hyper good with  the food and exercise.

But a bit of good news to end. I can now walk into the sitting room or to the bathroom without using my crutches or the chair. Its progress, slow, but at least its something. :)

SPRING TIME AND NEW BEGINNINGS

Can't believe its been 2 month since I last updated this.

Although things haven't been fast moving  things have still progressed in all areas of my life.

Started taking the physiotherapy more seriously again and have Incorporated it with other exercises in the hope that it will help me lose some weight. If not then at least it should keep my fitness levels up and help tone up some of the flabby bits. As a family we are all trying to eat a lo healthier and have stopped buying meat and fruit from the supermarket and using a local butchers in Grange town called Stirks instead. Their meat is the best and so are the prices so it is not just healthier but cheaper, always a bonus. we have also stopped buying so much processed food from the supermarket as well as changing from their bread to fresh baked bread . All of this seems to have helped my IBS a lot so another win win situation. Weight loss isn't great bu it is starting to decrease. The worst part is working out what is due to being unhealthy and weight gain and what is down to swelling from IBS, Arthritis and Fibromyalgia as these can all cause drastic weight gains. Add into the mix being in a wheelchair and pain killers and its not a good combination.

Only five weeks after the Easter break left in my first year at University and I cant believe how quickly it has gone ! I have enjoyed my time at Sunderland College (with it being an extended degree of 4 instead of 3 year the first year was at college), it has been a little disappointing in some aspects,. Definitely the best thing I have done but a bit disillusioned with it as not all that was promised or expected was delivered. But so excited about moving onto campus properly come September ! After speaking to my tutor it looks like if I keep up the hard work over the next 3 years then I will be heading for a first. So if you are sitting out there reading this, disabled or not, wondering if you could/should...just stop and do it !! you will be surprised how much help there is out there and how much you will enjoy it. Personally I have learnt a lot about myself in the last 9 months and found things out about myself that I never thought I would be capable of after my amputation.

Still counting down for September and Disney and have managed to get out socially with friends the other week. This was the first time in nearly a year. I plan on doing it more often, like I said before the amount of confidence going to University has given me is unreal. I released that I CAN do these things and I SHOULD enjoy myself just like everyone else and I am NOT an inconvenience ! So seeing as it was far and few between occasions off I went to the beauty salon. Can I just say how the hell women put themselves through that torture every week for those single eyelashes is beyond me! I don't know what was worse getting them on as it felt I had been blinded or taking them off. It was all worth it  though I felt like a million dollars and for once was happy with my body image, something I haven't been in a long time.
I have also been inspired to apply to more casting agencies, so that is what I have done.  Having had a screen test for a movie I released it wasn't an experience that most people will get and I loved every minute of it. I may not get the part but what a story to tell the grand kids.

So I guess overall just like spring I feel like I have been given a second lease of life. Another chance not just to plod along but to actually apply myself and do things I enjoy, experience things that prior to the amputations I wouldn't have dreamed of never mind now, just live life to the full and damn the wheelchair and no legs. My kids see me living life to the full and not letting things such as no legs hold me back then hopefully they will relaise   that in this life anything is possible, never give up and dreams can come true if you work hard.This is the legacy I want to leave. I am not saying its going to be easy. I am not saying am not going to have set backs or issues. Hell I could be on a total downer tomorrow and sit and wonder how much more I have to take and why me. The point is..eventually... the good days will out weigh the bad ones. It just takes time and a whole lot of hard work.

REFLECTIONS

Happy Valentines to every one !!!

Its times like this that make me reflect on how lucky I am. My mam always used to tell me that I should be thankful as there is always some one worse off in the world then me. She was right.

Although the pain today is making it hard to appreciate and see that.

Due to this horrible weather the UK is suffering from  at the moment, my pain has tripled and caused all kinds of issues. One being missing time at college. I have already had to take a week off and struggled most of last week to attend. By Wednesday they where so bad I had to ask some one else to do the experiment for me ( dissecting and eyeball yummy !) and some one else to take notes. Thursday I had to miss a big maths exam in algebra, luckily though the college have been very supportive and I will be able to sit it when I return after the half term.

Its one of those days where I could climb back into bed, pull the covers up, curl into a ball and cry with pain.  Instead due to  having responsibilities and things to do, it has made me reflective. Since my first Symes amputation 7 year ago my health has started to deteriorate. By the time i had both lower legs removed 3 year ago it rapidly went down hill. I have been currently diagnosed with the following:

stating the obvious - double below knee amputation
raynaud's in my stumps (circulation issues)
Osteoarthritis in knees, lower back, hips, shoulders, wrists with possible Rheumatoid arthritis in hands
Severe sleep apnoea 
Chronic fatigue syndrome
IBS
Ulcer
Fibromyalga
also prone to anxiety and panic attacks as well as depression.
Now isn't that a lovely list !! and that's what I can remember off the top of my head.

But am still lucky.
My hubby David has been my rock and there is so much put on his shoulders and he takes it all in his stride. My children have been brilliant. They may have the moments ( which kids don't !) and  I may not see eye to eye with the two oldest ones, but with out them two I would be lost. My support network also contains my very close friends ( you know who you are), who are like family to me and are my surrogate brother and sisters again we would be lost without you. Our  own family's have not been there to be blunt about it. David  is a proud person and does not like to ask for help from any one but during the amputations and every thing we have been through,  not one member of our family's offered or even asked if he needed help or support with the kids. As my mam was dead by this point the only person that tried was his mam, god rest her soul. No phone calls, no hospital visits, nothing .

But am still lucky.
David is my 3rd husband. The first one is not worth mentioning, a silly mistake from my youth. The second is the oldest two "sperm donor" ( sorry jo had to pinch it), went missing for 8 years of there life and refuses to pay a penny. What he has paid over the last 13 years is about a years worth with arrears in the thousands but always finds a way to  get out of it or disappear. And David plods on, taking on more and more so I have to do less and less, never complains still loves me for me a fantastic father and a fantastic husband. He always understands when am ill, knows the right things to say or do, how to make me smile and stands by me no matter what. I have had other tests done that have thankfully came back with the all clear including for my liver, heart (they thought I had been having mini strokes),cancer and genetics. At this moment in time we are awaiting the results from a MRI scan . Every time the post comes I get a sinking feeling in my stomach. I honestly don't think i could take another lot of bad news, another diagnosis of something being wrong or something else for me to fight against in order just to lead a normal life.

But am still lucky.
I am not doing well with the weight loss, still trying to battle on to get this degree as I want a better life for my family. My youngest boy has ASD (autism spectrum disorder) and may very well have a form of Talipes ( we need to have that confirmed) and taking him to Florida every two years is my goal as it really helped him to manage some of his social issues and bring him out of his shell. I don't care if I have  to scrape the money together or beg borrow and steal. I will do it for my children especially him. I don't care what any one thinks or says.

But am still lucky.
I want to work, but I can barely manage to type this blog today.

But am still lucky.........


  

Time Moving on

So we are nearing the end of January 2014 and again things have moved on.

College/University is still going well and still achieving outstanding in all areas bar math, but its math, that can be forgiven and after all it was still a pass.

Thoughts have changed on which area I will specialize in as would like to combine CBT/ behaviorism with Psycho dynamic approach. With this in mind I have been looking at studying either a Masters or PHD. So this summer I will be looking for a placement to get experience in a therapy setting.

Since my own CB therapy I am refusing to let anything stand in my way or my dreams. This I have found is a difficult thing to do when you are disabled. You get so used to people telling you that you can't do this and you can’t do that and before you know it you believe them. Challenging that assumption is a hard road to walk (or wheel!) and it is so easy to sit back and believe them and give up. But if you did that look at how much you would miss out on.

To me the most difficult thing I have ever had to do was challenge that belief, accepting that this might be as good as it gets health wise and moving on. Although I enjoyed working prior to the amputation and in some respects after as well, dynamics do change when your disability is no longer something that people don't notice. You feel a burden, inconvenient as if you are getting special treatment as people are too scared of being labelled with disabled discrimination. It leaves you with a bad taste in your mouth. Always wondering if you were employed for your skills or because they were too scared to tell you were not good enough for it. Or was it the simple fact that they have to be seen as being diverse? Are colleagues helping because they want to or because they have too? in some respects it is more daunting going back into education as not only do you have all of this to contend with but the fact that the majority of people you will be mixing with have not had experience of someone in a wheelchair or an amputee with no or very little life experience behind them that will enable them to deal with it. In fact looking around college some have barely got out of the stage of getting pocket money and worrying about makeup and what you look like (which can cause issues as neither prosthesis nor a wheelchair are high item accessories!...I think I will take the pimped wheel chair this morning with the bling in purple because that's what’s in style this week...). But somehow these people seem to have more insight and more patience so there is hope yet for the human race. There is no second guessing about what people think as they are just as insecure as you are.

The results from the sleep clinic came back and I have sleep apnoea, so no surprise there. However this is at the rate of 40 times a night that it affects me which is really high. So I now have a CPAP machine to use at bed time. Apart from worrying it will give the husband a Dearth Vader fetish, it seemed to work well last night so lets see how things progress with that one. Still battling with the weight issue. I did do very well at Xmas and managed to not put on any extra weight and I have made myself a spread sheet for stats (btw passed IT module 95%) that I am checking every day. This is so I can control my own exercise and diet as at a glance I can see how much or how little I have done in a week/month but also how well behaved or what areas I need to sort out for my eating. AS for the split in the stump I have found some dressings that protect and cover so using those and it is working. Also I have had my appointment through for my MRI scan in two weeks so see what happens there. 

Looking to the future, there is not long before the experience of college is behind me and I face my next challenge of being on campus. Hoping also that the CPAP machine helps my energy levels and fibro and I can then exercise more which in turn will enable me to lose the weight I need. That’s when the real challenge starts. Can I leave the wheelchair behind or is it part of me for life?

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

TIME APART

It has been four month since I last wrote anything. To be honest I didn't see the point or writing unless there was something to write about and the last four month to some degree has been the same old same old....
However saying that certain things have happened.

Still trying to battle with the Fibromyalgia which has included and not limited to CB Therapy which didn't work for me, upping my exercise, changing my diet, playing around with the pain killers and just in case some herbal remedies.  So far the attacks are not as often unless I do something really silly like write, hold a book for too long or try to bake (Easter saw me laid up for over a week!)Still waiting on the Sleep clinic, off to there next week so lets see what happens.

With regards to my personal life I have re booked Disney for next year and I am happy to say that I have got my place at university to study Psychology in September.

 However as a disabled student I am still trying to get the college I am doing the first year with to complete a questionnaire I need done to enable me to be assessed by the University for the help I will  need whilst there.  I am glad to have something to look forward too as I am sick and  tired of being out of work even though I know it can not be helped.  I really don't understand how some people actually like this kind of life!  David is still working hard with his photography and my eldest is due to leave to go Staffordshire University in September. My eldest daughter is achieving well at school and I am very proud of both of them. I am unsure if I have mentioned this before but my youngest son Tyler has been diagnosed with ASD(autism Spectrum Disorder), which has proved to be challenging but very rewarding at the same time. It looks like last years trip to Florida helped him to adjust and accept certain things better so hence the reason why we have booked again, even if it kills me or breaks me, we are going back if it means it will benefit him.  Not to mention the brilliant time we all have as a family.
We have been told it is more social interaction that he has the issues with and is 2 year ahead in maths and reading then his year group/age and could sit his SATa now.  He is 98th percentile when it comes to using and understanding context and grammar of language....in other words he is a smart arse :)

The biggest thrill for me so far has been when I was asked to do a screen test  for a major film role but it is all hush hush so can say no more, but how many people get a chance to even do that, it was one hell of an experience !

Things with rehab and the amputation have came to a screeching halt am afraid.  Was trying to up the anti with the walking and being more independent (due to the fibro I can no longer self propell in the chair) and was using the recent nice weather to  try walking and physio in the park. It looks like I have developed a pressure point though.  Woke up 2 days ago, put my legs on, went to the bathroom (ooh which I forgot to tell you has now been fully adapted, we paid for all the decoration, the council paid for the adaptations)and when I took my legs back off it was bleeding right next to  my scar. After trying to get some information on what had happened and how to manage it (GPs as usual wanted nothing to do with it as it was down to my amputation and the district nurse couldn't do anything or suggest anything to do as it was not an open wound),  it looks like a problem with the legs so I need to go to the Freemans...but there is a problem you see....they will take my legs off me due to the fact am overweight for them.

Great choice eh? lose the legs, become totally housebound again (screwing up uni), and be a fat bird in a chair with less chance of losing weight (how do you lose weight when you can't get out of a sodden wheelchair?), or say nowt, wait for the pressure point to(hopefully) heal and keep trying to lose weight by exercise as well as diet (without starving yourself),praying the pressure point doesn't come back or get infected?

I am starting to wonder what help there is for amputees in the UK, or more specifically in the North East of England.  My experience's so far are not good. There seems to be no support network, or places to go to find out answers to everyday questions concerning pressure points or weight /exercise problems for example. It is very much a case of being bounced around from the doctors, nurses,limb centre,walk in centres and physio with many of them either unwilling to deal with you or just no understanding of what you are experiencing.