Som många andra så söker jag på internet efter information och svar på frågor rörande mina sjukdomar. Av en slump hamnade jag på en sida där Addisonpatienter i England hade kommenterat en artikel om Addisons sjukdom. Jag fick sådan igenkänningskänsla och kände mig så berörd av de kommentarer dessa människor skrivit. De beskrev precis som jag och andra i Sverige och hela världen att de har upplevelser av olika konsekvenser av sjukdomen att jag kände mig manad att dela med mig av några av dessa kommentarer. Detta för att påminna er alla om att ni inte är ensamma, svaga, lata eller mindre "sjuka" än vad ni faktiskt är.
Addisons sjukdom är en allvarlig kronisk sjukdom som kräver livslång medicinering, omvårdnad och planering för individen för att möjliggöra att leva ett gott liv. Det finns säkert de som inte håller med eller inte insett hur mycket sjukdomen kanske påverkar deras liv. Men de finns också de som upplever att sjukdomen innebär ett funktionshinder och ett handikapp.
"Generally speaking, coping with Addison's is not easy. The doctors valiantly try to present an optimistic picture but as I have said elsewhere, they may know all about the ship but they don't have to put to sea with it. The real truth is, that it has it's up's and downs and I think it is generally true to say that things compound with age, but that should not worry you for a while yet. You must give yourself plenty of time to rest and you should not hesitate to let the Doctor know when you feel unwell. Any infection has a fine old time with your immunity down and that's why you need the rest. I am a lot older than you, I am 66 and I have lived with this thing since I was fifteen. In fact I nearly died with it, but I've had a good life, even though there have been difficult times. Now, as I get older I really am finding things a pain. I think that's because your body gets tired of firing on three cylinders... Some people fair better than others and you are just settling down to coping with it really. Things will improve and you will have a good happy life I'm sure, but always remember, you are running with a problem, you must remember that and not push things too far. You cannot expect to burn the candle at both ends like your companions may do. Also, you must be brave when things go wrong and although it seems hard for me to say this, you must soldier on... Brace up as they say and pick up your burden, wait until you are sixty six ( I shall be gone by then no doubt) you'll find you get through and with plenty of worthwhile times to remember."
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I have lived with Addison's disease since I was app 16 years old and I am now 64... I can say that there are many days when I wish to god they had never found a 'cure', because I would be history by now and at least the struggle with this wretched thing would be finished. I have to re-enter hospital if ever I pick up a simple sickness bug and I've lost count as to how many times that has happened. And I have now got at least two of the 'extras' that go with this disease, arthritis and thyroid disease. Even with replacement therapy there are frequent periods when I feel very unwell and crushingly tired. I would imagine that it would be the same for people with adrenal fatigue. I always try to keep a happy face for the doctor at the hospital but I am tired at heart and it gets worse, or so it seems, the older I get. The problem is I don't see how replacement therapy can ever match the output of a health body..."
"...after being diagnosed with Addison's 2 years ago i have gone through hell with it. I've been in and out of hospital with various illnesses and bugs... I have so many medications to try and boost my immune system and feel I'm not getting anywhere... I double up on my hydrocortisone steroids when I'm ill but even that leads to a crises... I'm now 27 have a 9 year old and I'm worried things are not going to improve I live with my parents because when I'm ill I just can't do anything. I get extremely ill, feel sick, bad headaches and have extreme fatigue. Will it get any better!?..."
"I was diagnosed with Addison's disease 32 years ago when I was 26... My advice is to not hang back, live your life. You can have a family (I started late and have one son). Except for a propensity to put on weight and a long labor, I had a very uneventful pregnancy and my son is fine. I work full time and do trail walking and swimming for recreation. Eat well, get enough rest, and drink alcohol moderately. You can have a great life. Over time, lots of people develop health problems. By the time you're my age, you won't feel so out of place. You are not damaged goods, you just have something to deal with.... I hope I make 85 (my mother is still living at 93 and her brother is 96). I know I will not be able to live alone in old age because of the fear of having an Addisonian crisis without help, but I can deal with that..."
Det är lätt att glömma att vi med Addisons sjukdom finns över hela världen och många av oss delar samma funderingar och problem. Ibland kan det underlätta att läsa andras historier och känna sig mindre ensam och stärkt.
