Access

“Access denied!”

That’s what it often feels like the world is saying to me when it is impossible or complicated to use buildings, services or trying to attend events.

I cannot speak for every wheelchair user or disabled person in the world, but surely I cannot be the only person who finds it frustrating in this day and age or supposed “inclusion” and equality.

Since the Equality Act 2010 services, businesses, and events should make things accessible and if it is not possible then that business should bring the service where possible to us. It’s classed as making a reasonable adjustment. There are exceptions to the rule which include listed buildings, but businesses will get around this by saying that the building is listed which stops them from putting a lift in or if there are stairs saying that they are prohibited from putting a stairlift outside due to it being listed, when the railings are either not or the stairlift will cause no damage to the building. They use loopholes in the law and building listings to great round or just flat out not make any kind of reasonable adjustments as the cost could be prohibited. However, what these businesses don’t realize is that they are losing out on a substantial amount of revenue.

If I want to go anywhere, do anything I have to do research days before, sometimes months before in order to make sure that where I want to go is accessible. How fair is that? Would you do that? Would you think that is reasonable even if all you want to do is go out for a meal with friends or take your children somewhere?

It’s never about trying to get something for nothing, and just like any minority issue, there are a few bad apples who will try and get something for nothing or special privileges and this results in the stories you see in the news and you hear people talking about. Benefit scroungers, pretending to be disabled or ill to get things or extra help, people complain about how people on disabilities or in wheelchairs are jumping queues , however, all I want is to be able to access the same things as everyone else, a point I proved recently at Showmasters London Film and Comic Convention.  One of the days we needed to early so go through the main entrance. I had not bothered to register as needing extra help or a carer as I don’t when am using my electric wheelchair, different story if I had been using my manual wheelchair to some degree as David would have to push me everywhere as I cannot self-propel. Instead, I used my electric wheelchair for the weekend, mainly because I wanted my independence.

 So when we went through the gate they automatically showed me to the carers line for extra help. When I asked if I was in the right queue as I didn’t need the extra help the guy looked surprised and told me, in that case, go through the normal queue which I was more than happy to do, much to the surprise of some of the attendees.

You see the entrance was flat, I didn’t have to self-propel and the lines were maneuverable, so no need for me to skip ahead. I did slow the line down to some degree as my electric wheelchair only goes at a very slow speed, this did annoy some people so guess am dammed if I do (get extra help and special treatment), and dammed if I don’t( and I access I like everyone else). Like I said I cannot speak for another person who has a disability or uses a wheelchair but am happy to access services, events and businesses just the same as everyone else, that’s all I want. Whether its everyday things like going out shopping or going for food, to special occasions like a night out, event or weekend away or even if I feel like treating myself or my husband wants to spoil me and we want something a bit more luxurious these are things I should be able to access without having to spend a ridiculous amount of time on research beforehand.

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.

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?

LIFE GOES ON

So not coping too well with the staying at home thing until my health is better.

Applied for a job today, just local and part time but lets see how it goes. Other then that still waiting to hear from the rheumatologist, as still need the ultra sound on my hands and the results from the x rays and bloods.
In the mean time I have opted to down grade from the morphine back to Tramadol for pain relief.  Unfortunately this doesn't work as well as the others but it gives some relief and I am hoping along with the Amitriptyline and the sleep clinic and therapy, it works.

Still doing the physiotherapy in the mornings, now up to 45 minutes each time but  without them I have a lot of pain and great difficulty in moving.  Some mornings I can't. So at least the exercise keeps me moving... literally

This is where are hoping to stay the next time we go to Florida.  The weather there was amazing and really helped  my legs and arthritis  This was when I noticed how bad things had got.  Whilst in Florida not only did the aches disappear but my mobility increased dramatically. Upon return to the UK it seemed to hit me in a matter of days.  Not only did the pains come back ten fold but my mobility suddenly dropped.

The  stumps are not doing so well either, due ton so if swelling and circulation issues. Will eventually have to bite the bullet and go back to the limb centre to be remeasured and re fitted for my legs. The only concern is that due to my considerable weight gain I may not be able to wear prosthetics. Trying to lose the weight should be easy in my mind, but as most of you are already aware of, not so easy in reality. But lets keep trying. I was once told by my granddad that you get out of life what you put in so if you give 110% you will get 110% back. So every day I start again and try.

HOW TIME FLY'S WHEN YOUR HAVING FUN....NOT

Well it is hard to believe that 5 month has gone by.

The road I have been  on has been a bumpy one to say the least, with lots of twists and turns along the way. The first thing I guess would be to mention what happened at the tribunal.  Well I lost but not after proving my point and making them very uncomfortable.  They turned up 6 suited and booted to my three, they had a lawyer I couldn't afford one so represented myself. His statements where contradicting and he even tried to say that I was in a wheelchair prior to this amputation which is untrue. Although I lost it felt really good to be able to take a stand for myself for a change and not be intimidated to back down.  The holiday was excellent!! Best thing ever and just what the doctor ordered for me.  Although the legs did blister and I had to spend at least one day with out my legs on, it did not put me off  from having fun and I have to say all the staff at the hotel and theme parks where very helpful so a big thank you and well done to Disney world. In fact they where so helpful that when we turned up we found out that they had put us on the second floor, bearing in mind I still cant do stairs. They immediately changed that for us and because the rooms where not wheelchair accessible ( although they where still roomy enough for me to get in and maneuver with my wheelchair) they provided a bath seat for me to use. The flight staff where brilliant with Thompson's as well we booked in premium economy for the extra leg room and it made all the difference to me. They where great with the wheelchair and the assistance on  and off the plane, getting rid of all the fears I had.  In fact I enjoyed the holiday so much we are planning to go back next year. Nearly all the rides where wheelchair or disabled access and everywhere we ate very accommodating  in fact so where all the shops and transport as well.

However, on my return things took a  turn for the worse.  Within two weeks of being back in the UK I started suffering with pains in my hands, fingers,wrists, shoulders and back. This was annoying to say the least as in Florida it had not effected me in fact the sunshine and the heat helped to improve my mobility greatly. Within a very short period of time I ended up on the sick and have since had to leave work altogether.  The doctors checked for rheumatoid arthritis as I already knew I had arthritis just not what type, but this came back negative.   I have tried liquid morphine, zoramorph and oxycontin which just ended up in server side effects and a lot of time staring at walls!
In the end I was referred to a rheumatologist at the hospital who thinks I may suffer from Fibromyalgia that is also causing chronic fatigue syndrome. To make sure they have x rayed my hands, taken more bloods and I am awaiting a ultra sound as well. Unfortunately this is something I will have for the rest of my life but symptoms can be elevated with exercise, help with sleep and medication as well as less stress and relaxation ( 6 kids(one being a hormonal teen), one dog, one cat and two kittens..really? they think I can cut stress out and relax). So the plan is they want me to attend a sleep clinic and start taking amitriptyline.  I already exercise every day due to the physio  I do and I am looking at ways to loose weight, so cross your fingers (cause I can't ) that it works.  I am hoping to get back to work once the pain of this is under control. Obviously the knock on effect it is having with my walking as using the crutches or wheeling myself around is extremely painful and it also can be connected to the pain I have in my stumps.
So at the moment  I am waiting to hear from the dole regarding ESA and have applied to University to study Psychology so hoping that comes through.
OOh before I go another thing to add to the list of things wrong I also have a stomach ulcer.....my life is great  :)

TEARS, TANTRUMS BUT NO TIARA'S

Sorry it has been a while since writing anything down.  The only excuse I have is life getting in the way.

so much has happened since the last time I sat here to talk to you, where to start?  From the beginning I guess.

I am doing good. After a few false starts with the physiotherapy, things started to get a lot better. I had some issues with blisters that we thought was down to the sockets or the liners not fitting properly, but what we found out was it was due to the stumps sweating. I know this sounds bizarre, it did to me when it was first mentioned, but every time I put my legs on any activity I do will heat them up, there fore they will start to get "sweaty."   So after some research ( as this had never been mentioned before) I found out how to care for my stumps and the liners to help prevent this from happening again.

So every night I take the legs off to rest the stumps.  I wash them down with warm water but no soap then dry them thoroughly.  Then I use a soft lint free cloth and warm water and wash the inside of the silicone liner and dry it off with a lint free towel.  Then I use a little bit of baby oil on the stumps just to make sure the skin doesn't dry out.  At bed time I use a specially formulated deodorant in roll on format.  no I know what you think deodorant for stumps, but this was actually recommended to me by my limb specialist. you put it on and let it dry leaving it over night then wash it off the next day. you must follow the directions .  so far it has reduced the redness I was getting from wearing my limbs and as long as it keeps the blisters away I will be happy.  Especially as I am off on holiday in 8 weeks.

The physiotherapist was so happy with my progress that they have now moved me on to elbow crutches in the house and for transferring, which means that I am sorted for my holidays.  I ended up losing my temper (surprise), for the umpteenth time when I couldn't get into the car the way they where showing me.  In the end my friend came round with her car and I worked it out on my own, sometimes i think it just takes them to show you the technique but for you to actually go out there and do it for yourself.  I also believe that when you do finally conquer those demons that it means more and does more good for your own self confidence.  I have missed out on a lot over the last couple of month due to be too scared to try things including my sons 8th birthday party, going out with my kids and the Jubilee celebrations at the park and beach with my family. But know am ready to go back to work in the office.
My current employer has been fantastic in supporting me during these last couple of month and just wished there where more companies out there who could be supportive of there employees regardless of what is wrong or whether a disability is involved or not.  I am not going to lie.  Going back to work is scaring me shitless !! I don't expect you to understand. I don't really understand other then to say that am scared of making a fool of myself and not wanting to be relying on any one for help.  In an ideal world I would be able to wait until all my rehab is over, out the wheelchair, no longer needing the taxis, no sticks, fully independent.. But needs must when the devil is knocking at your door as the saying goes and I do have holiday money to save up.  I think my main concern is two fold really.  One that something will happen, I will fall or something at work and show myself up (again), in front of every one I work with and second, I stick out like a sore thumb when I all want is to "fit" in and belong.  I have to rely on everyone for doors, for drinks, dinner etc.

I could leave work and go on ESA but I have no idea if I would be entitled to it and it would mean a hell of a drop of income.  Why would I not be entitled to it ? Well that brings me to my other bit about what is going on in my life at the moment.  I am currently taking a former employer to tribunal for discrimination and unfair dismissal.  Part of this is non payment of National Insurance, which means am missing a years worth of contributions.  This in turns means no benefits, this is why I had no choice but to rush straight into another job when I could have done with taking the time out for rehab to be honest.  So as you can see no idea about ESA.
As yet the former employer will not accept the claim and is trying to say that I am ...well...basically paranoid, but he is also trying to get out of the unfair dismissal part as well by trying to get it struck off.  Looking at my new employer and my past employer , the difference  is unbelievable .  The size of the companies is not much different  but the way they treat their employers is phenomenal !!

And finally the holiday. 8 weeks till I leave for Florida. The arguments I have had with Thompson's is unreal over the dinning plan and believe it or not they booked my wheelchair on the plane and although it was requested no assistance for getting on the aircraft or off it !!  I have asked Disney for a adapted ground floor room so lets see what we get. It has been suggested that I email the holiday company direct and see what happens, maybe I will.

However I am still waiting for my lottery win so I can buy better legs and enjoy my holiday,but still no tiara....

ALL CHANGE....AGAIN !

Well my first physiotherapy  went really well and have had another one since then.

All concerns where laid to rest when I managed to impress them with a sit to stand from the wheelchair to the bars without using the bars for support. After 6 lengths of the bar they told me that if I could sit to stand from my chair to a zimmer frame then I could take the frame home! As I have always preformed better under pressure and in the face of a challenge, ( just take a look at the rest of my life!), I managed and felt rather proud  of my self to say the least.
I asked Emma my physiotherapist  for a prognosis based on what I had managed.  Although it was not fantastic I was really pleased with it.  Within 2 month I should be steady enough and confident enough to transfer from my chair to a front passenger seat of a car or another chair, using a swivel transfer.  Within 4 month (in time for my hols), I should be able to get into the office without my wheelchair, get around the house with out my chair and when out shopping etc using  mixture of sticks and the wheelchair.  This means that although I will still need a wheelchair to go away with as well as help on the plane etc , I should be able to transfer into the plan seat, use the toilets, transfer on to rides and sit at the dinner tables for meals.
They still think at least 6-9 month before am out of the wheelchair altogether and using just sticks/elbow crutches and 12-18 months before am fit and well.  This weeks physio went even better.  Since getting the frame to bring home I have been practising very hard with the stand to sits from the chair as you can see.  So much so that when I went on Thursday they took me out of the bars and give me a walker (frame with wheels), and I walked 35 meters !! I was ecstatic! We are aiming for 70 meters this week.

Obviously I was still concerned about work as the news was good for me but not so much for that.  After a telephone meeting with one of the managers of the company they agreed to support me through this period which was fantastic!!! So at the moment I am working from home for 16 hours over a 4 day period which fits great with my treatment and hospital appointments. This will be looked at again 2 month.
Although this does now mean that I am totally house bound and a recluse because I now only leave the house for appointments at physio and hospital.  Nothing more has been heard from the council re a ramp and unfortunately whilst out on Bank Holiday with my daughters, even with a wider solid ramp and wider doors, I still went off the ramp and nearly splatted on the floor !! David pushed too fast, the wheel at the front turned and it went off the edge.  With the speed David was pushing it didn't take much  for the momentum to take the rest of the chair off ! Lucky for me David caught the chair before it went completely off and lift it back onto the ramp.  Needless to say he is not allowed to push me up any more lol.

I still can't believe though that in this day and age there is still places that although refurbished not long ago don't have disabled access.  Last Saturday was my best friends wedding, but due to the premises not having disabled access  I was not able to attend the reception day or night.  I was disappointed and my friend was upset by this.  As to date I am still waiting for a reply from the company that owns the pub.  Will keep you informed.