#9

Grudzień to miesiąc podsumowań. Kończy się kolejny rok, a my zazwyczaj zastanawiamy się, co w tym roku się wydarzyło, co zrobiliśmy dobrze, a co chcielibyśmy poprawić.

W tym roku miałam gorsze i lepsze chwile. Wszystko, jak to u mnie bywa, uzależnione jest przede wszystkim od stanu mojego zdrowia. Dlatego w tym poście chciałabym napisać o bardzo ważnej dla mnie roli, jaką pełniłam przez ostatnich kilka miesięcy, a co bezpośrednio związane jest właśnie z moim zdrowiem.

Przez ostatni rok, a także poprzedni, miałam zaszczyt być ambasadorką kampanii http://www.rzsporozmawiajmy.pl/

Sama od 13 roku życia choruję na RZS. Jest to bardzo trudna choroba, która czasami komplikuje nam życie. Nie pozwala w miarę normalnie funkcjonować. Ja sama, kiedy mam gorszy czas, wstaję rano, mam tzw. sztywność poranną, bolą mnie praktycznie wszystkie stawy, a dodatkowo towarzyszy temu wysoka temperatura. Jak więc podnieść się i robić to, co miałam zaplanowane? Wtedy oprócz leków, które przyjmuje normalnie, sięgam po leki przeciwbólowe. Kładę się, a właściwie leżę dalej, bo przecież nie mam siły wstać i kilka kolejnych godzin przesypiam. Czekam w śnie, aż to wszystko minie. Osobie zdrowej bardzo trudno zrozumieć, że kiedy jestem w takim stanie, nie mogę robić wielu rzeczy – normalnie pracować, że muszę rezygnować z wielu wcześniej zaplanowanych spotkań, czy wydarzeń.

Cieszę się bardzo, że zostałam ambasadorką właśnie tej kampanii, czyli RZS Porozmawiajmy. W swoim życiu przeszłam przez najróżniejsze sytuacje, spotykałam na swojej drodze najróżniejszych ludzi. Z własnego doświadczenia wiem też, co mam robić, żeby czuć się i funkcjonować jak najlepiej. Jestem na terapii biologicznej, mój stan zdrowia bardzo się poprawił i nie chcę, a wręcz panicznie boję się powrotu do tych „złych dni”. Myślę, że dzięki właśnie takiemu doświadczeniu mogę podzielić się tym wszystkim z Wami.

Moje posty oznaczone „#” przede wszystkim poruszają kwestie związane z chorobą, leczeniem i wydawałoby się, że są skierowane do osób chorych. Jednak również zdrowe osoby znajdą w nich wiele wskazówek i rad, które mogą się przydać każdemu.

W każdym poście podkreślam i powtarzam rzecz, wydaje mi się najważniejszą – mówię o konieczności budowania dobrej relacji z lekarzem. Dzięki temu dzisiaj czuję się lepiej. To nasza (moja z moim lekarzem) wspólna praca, długie, szczere rozmowy, odpowiedzi i pytania doprowadziły mnie do coraz lepszego stanu zdrowia. Ja generalnie jestem szczera i otwarta. Być może moje wrodzone cechy mi w tym wszystkim pomogły. Dzisiaj jednak wiem, że te cechy są niezmiernie ważne w budowaniu relacji pomiędzy pacjentem a lekarzem. Po tylu latach spędzonych w szpitalach, rozmowach ze swoją Panią Doktor, znam swoje Prawa Pacjenta i wiem, że lekarz jest dla nas, ale to przede wszystkim od nas zależy, czy to „wykorzystamy”. To nasze życie, a dobra relacja z lekarzem w przypadku chorych osób pomoże w tym, abyśmy lepiej się czuli i mogli funkcjonować normalnie, jak inni.

W swoich postach pisałam na różne tematy. Znajdziecie w nich coś o Prawach Pacjenta, przygotowywaniu się osoby z RZS do podróży, ale poruszam też tematy dotyczące terapii biologicznej, czy wydawałoby się o tak normalnych dla innych, zdrowych osób, jak robienie sobie tatuaży, czy spożywaniu alkoholu podczas brania leków. Podpowiadam, jak przygotować się na wizytę u lekarza.

Jedni się z tym zgadzali, inni wyrażali swoje inne zdanie na dany temat. Dlatego cieszę się, że niektóre posty mogły z pozoru wydawać się kontrowersyjne i wywołały dyskusje. To dobrze, bo trzeba rozmawiać. Należy pytać i uzyskiwać odpowiedzi, poznawać zdanie innych. Tylko w ten sposób poznajemy lepiej naszą chorobę, a to powoduje, że łatwiej jest z nią walczyć.

Czasami słyszę „jak ty ładnie wyglądasz, jesteś zawsze uśmiechnięta, robisz tyle fajnych rzeczy, jesteś taka kreatywna”. Miło mi słyszeć takie słowa. Jednak wiele z tych osób widzi tylko efekty. Nie zastanawia się, nad tym, że jestem chora. Nie widzą mojego życia codziennego, tego, z czym się borykam. Tego, że na takie efekty ja, a także osoby chore na RZS, musimy pracować podwójnie, ile przeszkód spotykamy na swojej drodze, ile czasu spędzamy w szpitalach, na badaniach, nie wspominając o najgorszych chwilach przepełnionych bólem fizycznym oraz towarzyszącej na co dzień depresji. Mieszkam w niewielkim mieście. Mój szpital znajduje się w odległości prawie 150 km. Co miesiąc jeżdżę tam, ponieważ jestem leczona lekami biologicznymi. Wczoraj na przykład byłam na badaniach krwi, ponieważ w poniedziałek mam wlew. Musiałam wstać wcześnie rano, bo czekała mnie ponad 2-godzinna podróż, a przecież dojechać trzeba na czas. W poniedziałek znowu, pobudka przed 5 rano, żeby stawić się na wyznaczoną godzinę w gabinecie lekarskim. Potem cały dzień spędzony na szpitalnym łóżku, z podłączoną kroplówką, a na koniec dnia znowu ponad 2-godzinna podróż powrotna do domu. Po takim dniu jestem wykończona. Następny dzień odpoczywam, przesypiam. Mój organizm przyswaja dawkę leków, jakie otrzymał. Wracam no normalnego funkcjonowania i wtedy mogę znowu zająć się  własnymi sprawami. Przyjęcie leku biologicznego nie oznacza jednak, że na miesiąc mogę zapomnieć o bólu, sztywnościach porannych. Niestety, ale nie. Poza tym moje leczenie nie kończy się tylko na przyjmowaniu wlewów. Taka jest moja codzienność. Pomiędzy tym wszystkim, kiedy nie jestem w szpitalu i nie mam „gorszych” dni, staram się normalnie funkcjonować, pracować, spędzać czas wolny tak, jak lubię i w końcu uśmiechać się.

Dlatego bardzo się cieszę, że przez te ostatnie miesiące będąc ambasadorką kampanii RZS Porozmawiajmy, miałam możliwość opowiadać Wam o tym wszystkim. Cieszę się także, że mi zaufano i mogłam podzielić się z Wami moim doświadczeniem.

Jak zawsze, zapraszam Was na stronę RZS Porozmawiajmy oraz profil na Facebooku – https://www.facebook.com/rzsporozmawiajmy/.

 Tam znajdziecie wszelkie informacje na temat RZS, ale nie tylko. Poznacie tam wielu specjalistów, wspaniałych osób, które pomagają zrozumieć RZS, pokazują, jak z nim żyć.

Wielu z nas szuka odpowiedzi na pytania, które nas dręczą w internecie. Czytamy wypowiedzi innych chorych na najrozmaitszych forach. Niejednokrotnie są to wypowiedzi osób niekompetentnych, osób, które są rozgoryczone, nie współpracują z lekarzami, a wręcz powtarzają jakieś bzdury, które poleciła im jakaś sąsiadka albo znajoma znajomej i właściwie nie wiadomo, jakie są korzenie takiej informacji. Czytamy, jacy lekarze są źli, nie pomagają i właściwie nie leczą.

Wystrzegajmy się takich stron internetowych. Szukajmy takich, które są kompetentne, na których znajdziemy wypowiedzi specjalistów, osób, które są autorytetami. I taką stroną jest między innymi RZS Porozmawiajmy. Polecam ją szczerze, nie tylko jako ambasadorka kampanii RZS Porozmawiajmy, ale przede wszystkim jako osoba zainteresowana, chora, która właśnie tam znalazła wiele odpowiedzi, porad i opinii specjalistów.

Dziękuję wszystkim wspaniałym osobom, które poznałam i miałam możliwość z nimi współpracować w ramach kampanii RZS Porozmawiajmy. To osoby, które nie tylko nam chorym, ale także osobom z naszego otoczenia pomagają zrozumieć naszą chorobę, uczą jak na co dzień dawać sobie radę. Pokazują, że jest taka choroba, jak RZS, uświadamiają i pomagają. Cieszę się, że mogłam w tym uczestniczyć i podzielić się swoimi doświadczeniami.

Podsumowując ten rok, mogę napisać, że może nie zawsze dobrze, ale starałam się i uczestniczyłam w czymś ważnym, potrzebnym, a tym czymś jest Kampania RZS Porozmawiajmy. Mam nadzieję i będę robiła wszystko, żeby przyszły rok był równie dobry. Teraz wiem, jak ważna jest pomoc innym i dzielenie się swoim doświadczeniem.

Na koniec mojego grudniowego podsumowania chciałabym napisać kilka słów do osób, które się do mnie, ambasadorki kampanii RZS Porozmawiajmy, odezwały. Napisały mi, że dziękują za to, że jestem, że na blogu pisałam nie tylko o tym, co jest piękne, interesujące, ale także o zwykłych sprawach dotyczących osób chorych. O tym, że pomimo swojej choroby pokazuję, jak wiele można zrobić, że pomimo wszystko można normalnie funkcjonować. Piszą o tym, że po przeczytaniu moich słów nabrały siły i odwagi, żeby coś zrobić, Czasami znikam na kilka dni, bo są to te „gorsze dni”, ale wracam. Dla wielu jest to dowodem, że nie udaję, że mam takie problemy, jak inni chorzy.

 Z wieloma osobami pozostaję w ciągłym kontakcie. W jakiś sposób zaprzyjaźniłam się z nimi. Większość z nich robi, tworzy wspaniałe rzeczy. Od wielu się uczę i wieloma inspiruje. I tym wszystkim osobom to ja chciałam podziękować, bo to właśnie takie osoby dają mi siłę, i utwierdzają mnie w tym, że wszystko to, co robię w ramach kampanii RZS Porozmawiajmy, ale nie tylko to, także inne rzeczy, które robię, to wszystko ma sens. To takie osoby mnie mobilizują także do walki o siebie. „Nie pozwalają” mi na zamykanie się w sobie, izolację i trwanie w depresji. I mam szczerą nadzieję, że dalej będziemy się spotykali, chociaż tu w tym „wirtualnym świecie” i dalej wzajemnie będziemy się wspierali, uczyli, dzielili doświadczeniami.

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