Zanim przeczytacie proszę tylko o jedno, o nieocenianie gdyż ta zbiórka to chyba najgorsze upokorzenie jakie mnie w życiu mogło spotkać i uwierzcie nie jest mi łatwo. Pomysł z bransoletkami jak najbardziej aktualny ale nie dam rady tego przyspieszyć, a czuję się coraz gorzej.
Odkąd pamiętam wszystko robię na stojąco, pomóż mi w końcu usiąść.
I hope you won't judge me. This fundraiser is probably the most humiliating thing that could have happened to me, believe me, it was not easy for me to create this page. The idea with bracelets is still on, but I can't make it happen any quicker as I feel worse and worse with every day.
For as long as I can remember, I've been doing everything standing up. Help me to sit down.
For as long as I can remember, I've been doing everything standing up. I was able to sit as a child but as I was getting older it was getting more and more difficult, and then – impossible.
My disability stops me from sitting down. Having been standing for over 30 years, I have the impression that my legs will completely fail to work in a moment. Due to the relocation of my hips and the stiffening of my knees, I cannot sit down like you or any other person.
The fact that I can only stand means that I can't move (even a centimeter) by myself or even take care of myself. I rely on other people. Actually, without the stand aid (that keeps me standing), I wouldn't be able to stand for a few hours. And I'm afraid to rely only on my legs.
Yes, you are reading it right. I don't know another person like me, with the same disability. I cannot sit down. My life is all about standing (on a vertical wheelchair or with the help of a stand aid on which the belts support me) or just lying down. This is how I live my life, how I studied, met my friends, worked. I got used to it and I wouldn't complain but I feel like when my legs refuse to work fully, which in my opinion is close, I will only be able to lie down. The fact that I am standing does not mean that I am doing it like a normal person. My legs are twisted, my whole body weight is practically on the right, stiff leg, and my knee or ankles are really at a breaking point.
Ze względu na delokalizację biodra, mówiąc prościej - moje biodro nie zgina się do tego stopnia, że uniemożliwia mi to siedzenie. “Dysplazja stawu biodrowego jest jedną z najczęściej występujących wad wrodzonych. Polega ona zazwyczaj na spłyceniu panewki stawu…” - TYLKO, ŻE JA NIE MAM NAWET TEJ PANEWKI. Moje biodro jest po prostu “wbite”, zrośnięte ze stawem? Dzięki temu mogę właśnie stać, bo tak to mięśnie by mnie nie utrzymały ale kosztem tego, że nie usiądę.
Każdy chyba kto choć trochę “jest w internetach: wie, że istnieją takie implanty biodra, tak samo na zwyrodniałe kolano. Dlaczego więc cały czas mi się wmawia, że to jest nie do zrobienia? To jest właśnie główny powód tego, że chcę zasięgnąć opinii prywatnej kliniki z Londynu.
Due to the relocation of the hip, to put it simply - my hip does not bend to the point where it prevents me from sitting. 'Hip dysplasia is one of the most common birth defects. It is a medical term for a hip socket that doesn't fully cover the ball portion of the upper thighbone.' - I DON'T EVEN HAVE THAT. My hip is just "dipped", fused to the joint? Thanks to this, I can stand, because the muscles would not support me, but at the cost of not being able to sit down. Probably everyone knows that there are such a thing like hip implant, also for a degenerated knee. So why am I constantly being told this is impossible to do? This is the main reason why I want to consult a private clinic in London.
Od urodzenia choruję na rdzeniowy zanik mięśni, moja choroba to mutacja 3 genów (MYH7, RYR1 oraz CFL2). Niestety, diagnoza - Central Core Disease (CCD) jest tak naprawdę tylko teoretyczna gdyż w praktyce wiele istniejących usterek w moim ciele w 100% nie pasuje do tego schorzenia. Choroba ta również odpowiada za układ oddechowy. Zwykłe poważniejsze przeziębienie, które bardzo często przeradza się w zapalenie płuc może być dla mnie śmiertelne. W nocy jestem podłączona pod nieinwazyjny respirator. Wiatr, mróz czy okropny upał sprawiają, że nie mogę oddychać, a wtedy wpadam w panikę i autentycznie zaczynam się dusić.
I have been suffering from spinal muscular atrophy since birth, my disease is a mutation of 3 genes (MYH7, RYR1 and CFL2). Unfortunately, the diagnosis - Central Core Disease (CCD) is really only theoretical because in practice many existing defects in my body do not match this disease in 100%. This disease is also responsible for the respiratory system. The ordinary cold very often turns into pneumonia, which can be fatal for me. At night I am connected to a non-invasive respirator. Wind, frost or terrible heat make me unable to breathe, and then I panic and genuinely choke.
Up to around 23 years of age I was still doing quite well, I could stand. Then I felt something was wrong. I wasn't able to stand up for long and I would lie down more and more during the day. Eventually I realised that pain and weakness in my legs as well as constant swelling were not a temporary state because I was working too long or just being on my feet. I had a breakdown because despite my illness I was always an active person, outgoing, never bored. At that time, I also gained a bit of weight, which made it completely impossible for me to function. In my case, each new kilogram has to be supported by this one knee on which I basically rest the whole weight of my body. I also have insulin resistance, so I pay a lot of attention to what I eat. I try to eat healthy and avoid processed foods altogether. Every week I weigh myself, I feel literally every kg and every kg shortens the time I am able to stand.
I have been on strong painkillers for 3 years. At first it was fine (as if I had a new life). I even thought about returning to my professional career, but I started university. Now the medicine doesn't really work. I actually stay in bed whenever I can. I am afraid of more mental breakdowns, although I am trying to fight them. I currently don't work as I am no longer able to. I don't even do exceptions for my friends or family like I used to. 2-3 hours of standing and moving the nail file causes me a week's worth of pain in my lower back (2 years ago I closed my business, I did nails, eyelashes and make-up).
The photo shows my former beauty room, when I was still able to work.
Moja bezsilność i to co teraz robię dobijają mnie. Ta zbiórkę to chyba najbardziej upokarzająca rzecz jakiej doświadczyłam w moim życiu.
Right now, I feel that my right knee will break if it bends back a little more. It's a horrible pain. When I am not in bed, I stand at the desk attached to the aid. This is my salvation! Thanks to this device, I can do something on the computer, or just spend time at the table / desk like everyone else. I cannot stand in the wheelchair either, because it doesn't support my legs enough. There are no such wheelchairs / aids, so I have to make something to order, and this costs a lot of money.
I'm studying psychology online so luckily I can do it from bed or stand aid, but then what? The future scares me. Is it possible to do something to make me live like a normal person? Yes, but of course I need money. I wouldn't be asking for help if I could help myself. Unfortunately, the only thing I can do today is this fundraiser, which I hope will get some response. It may be too late soon. After that, it will be even harder for me to write from a lying position.
My helplessness and what I am doing right now are killing me. This fundraiser is probably the most humiliating thing I have experienced in my life.
NHS (Polish NFZ) has notified me that the only thing they can do is to change the position of my hips so I could sit down. But that would lock me in the seated position for life! There's also a risk I will not survive the surgery, I'll be on a ventilator for the rest of my life or will simply be uncomfortable in the new position. I can suffer with debilitating pains or breathing problems or become paralysed. Despite the risks, I'd like to give it a go as I am heading that way anyways, with my right leg being on its way out. Thanks to this surgery I'll be able to do most things by myself. I'll be able to move around by myself or even travel to work. I'll have better opportunities to do more things as I'll be seated in a safe position, without having to worry I will fall or get too tired to stand.
The doctors have suggested a private clinic.
The other option is an intensive physiotherapy. Two years ago I was given one hour of physio a month (yes, a month). I remember a few times the physiotherapist gave me some more of their time and managed to get my hip to be more mobile. We both noticed the difference. Ever since, I have been fighting for more physio as without the therapy the effects have soon disappeared.
The only thing the doctors can offer me here is a list of suggested exercises. They told me organising a fundraiser is my best bet, as theres is no money for the required physiotherapy.
I would like to start with the physiotherapy to see if there is a chance I can avoid the surgery. I'd also like to get in touch with different specialists around the country to see if there are other options I might not know about.
I also dream about a special wheelchair which would support my body in such a way that my legs are not under so much pressure. That would allow me to enjoy walks as right now I only leave my house when necessary.
Po tym co przeczytaliście na pewno kotłuje się w waszej głowie kilka pytań typu:
- Jak ona korzysta z toalety? Toaletę mam normalną aczkolwiek spłuczka powieszona jest o wiele wyżej co pozwala klapie odchylić się znacznie bardziej. Dzięki temu mogę być praktycznie na leżąco. Po za domem staram się z niej nie korzystać ale jeśli muszę to na szczęście w toaletach dla niepełnosprawnych nie ma klapy od sedesu więc również mogę jakoś z tego skorzystać. Kiedy WC jest standardowe muszę być trzymana całkiem po przekątnej. Nie korzystam z pampersów i szczerze przeraża mnie ta wizja, mam nadzieję, że nigdy do tego nie dojdzie.
- Jak jeżdżę samochodem? Jeżdżę na przednim, całkiem rozłożonym siedzeniu, leżąc na tylnych siedzeniach lub w wózku jeśli samochód jest do tego przystosowany.
- Jak się kąpie? Biorę prysznic na stojąco opierając się takim jakby stoliczku. Daje radę umyć się od góry do wysokości kolan
- Jak może stać i np jeść przy stole? Cały sekret polega na tym, że mam tylko 135 cm wzrostu. Kiedy stoję przy stole jestem na wysokości siedzących ludzi. Jak dziecko i nastolatka ubolewałam z tego powodu, teraz się cieszę, bo gdybym miała to standardowe +/- 160 cm to byłoby o wiele trudniej "żyć na stojąco".
I can imagine after reading all this you might have more questions such as:
>How does she use the loo?
I've got a standard toilet but the back of it where the flush is, is located up high so I can push the lid back. This way I can position myself almost horizontally. When I'm out I avoid using toilets. If I must, I use the disabled ones where there is no lid. If I am using a standard toilet I have to be held diagonally. I dont use adult nappies and I am terrified of the prospect of using them. I hope it will never come to that.
>How do I ride in a car?
I travel in the front with the back lying flat, in the back seat or in a wheelchair if the car is able to accommodate it.
>How do I wash myself?
I shower standing up, leaning against a little table. I can manage to wash myself from the top all the way to my knees.
>How does she eat at the table?
Luckily I am only 135cm high so when I stand at the table I am just at a perfect height. As a child I was sad I am so short, but now I can appreciate it would be more difficult to live standing up if I was any taller.
Jaki jest właściwie cel zbiórki?
What is the exact purpose of the fundraiser?
The initial concept of the fundraiser was rehabilitation, massages and a especially wheelchair on request, but as you can see in the meantime, a private treatment option has appeared because my knee does not seem to want to wait anymore.
I know of a private clinic specializing in orthopedics and scoliosis in London. The cost of the first visit is £ 250, the next £ 150. I don't have that kind of money, as of today I don't know how much the whole treatment would cost, but I know that I want to try anyway. I will certainly give you the full cost estimate.
I am also asking for help in collecting money for a specialized, standing wheelchair, which will allow me to stand and at the same time relieve my legs.
The stroller that I managed to find will be in production probably within a few months, and its cost, according to the designer, is at least £ 10,000. The one I have is already in a very bad condition, all crackles as if it was about to fall apart, the battery is there, but most importantly, I have no relief for my legs. After 30 minutes, I already feel significant discomfort, and then pain, which unfortunately prevents me from using the wheelchair for a longer time. As I wrote before, I only go out when I have to.
It seems to me that a cheaper and better option will be to do something on request because, as you can see, my disease has really specific requirements. As of today, I am unable to determine the amount.
If I would collect more than that amount that would be used anyway for physiotherapy, which is probably the most important here. Muscle wasting also makes my entire body weaker. It's hard for me, for example, to dry my hair with a dryer or pick up a huge cup of coffee. I also noticed that he feels the strain on his neck more and more, yes, because it is the muscles that somehow hold his head upright. It all gets really scary!
How much does physiotherapy cost? According to publicly available information on Google, the average course of physiotherapy treatment (initial assessment and 4 to 5 further treatment sessions) ranges from £ 240 to £ 300. Average visit costs range from £ 50 to £ 60. In case of muscle atrophy, 4-5 sessions twice a month is a minimum, the more so as massages would certainly also be included, because everything hurts me more and more, especially my spine. and massage brings me relief.
It is about 600 pounds a month, and it is known that I should exercise regularly and permanently.
I don't know what amount to enter.
2 visits to a private clinic - £ 400
At least 6 months of physical therapy: £ 3600
A standing wheelchair? I have no idea, maybe it will fit in £ 2000?
Thank you for every amount donated and participation in auctions on ebay and facebook. In order for everything to be legal, all payments from the sold items will be paid here for this collection thanks to GoFundMe.
I realize that I will not be able to raise that much money, but in fact, every pound will help me.
In the near future, I intend to design and make jewelry myself in return for a fundraiser.
Ps. Jeśli zainteresowała Cię moja osoba i chcesz wiedzieć jak dalej potoczą się moje losy zapraszam do polubienie FanPage .
Ps. Thank you with all my heart for each donation. If you are interested in how my story goes on please visit my fanpage .