Chronic Illness and needing help.....

Hi there. My name is Michelle and I'd like to share some of my life events with you. It’s hard to know what to say...I know I need help from my community, and beyond, but where to start??? and how detailed do I go?? May as well go all in...Please note; there are going to be things said that are not usually talked about, including things like diarrhoea and words like anus and vagina (although I’ll prob call it Bajayjay).

Here goes...

I was born with a heart condition, which through all this has been playing up as well. About 5 and a half years ago I developed a perineal abscess. For those of you who don’t know, that’s an abscess that starts between your bajayjay and anus. My doc at the time misdiagnosed me. He said it was a minor infection and gave me antibiotics. I rang every day telling him the pain was worse, and was told to be patient and keep taking the pills, and it would clear up. After a week I went to the hospital. I just couldn’t take the pain anymore.

Within 20 minutes I was in surgery. They cleared the abscess and I felt so much better, for a couple of days. Then the pain started again. Sent back to surgery and was told that a 'track' had started, and they inserted a 'seton'. I had no idea what this all meant. Basically, there was a small hole inside my rectum that faecal matter was going down, which was refilling the abscess area. So the 'seton' (kind of like a piece of ribbon) went up my anus to the hole in the rectum, followed the track to the abscess, from the abscess to the perineum and back to the anus where it joined up!! I was so uncomfortable and they said this could stay in place for a year or more!!!

For the next year and a half there were constant infections, and I mean every time I finished 1 lot of antibiotics, within a day or two, I had to go on another. You can imagine how that affected my stomach, and within 6 months, had constant diarrhoea.(and when i say constant, we're talking all day, every day, with no let up at all. Silver Lining... i lost alot of weight hehe). I had numerous surgeries to try fix 'down below'. For the next 4 years, I couldn’t leave the house because the surgeries had ruined any muscle tone I had down there, and the diarrhoea was all day, every day. It just didn’t stop... for four years. Nothing stopped it, apart from not eating or drinking. No medications helped, and the pain and nausea was...uncontrollable and unbearable.

I lost muscle tone, and grew weak, and had doctors wanting me to go into an aged care facility. I’m now 41, I was only 37 at the time. Too young for that, and I had my kids at home. My best mate at the time, and kids looked after me, and I appreciate that more than they know.

The depression and anxiety set in and I became suicidal. I finally found a doc in Te Awamutu who has been brilliant, and instead of telling me it was in my head, has done test after test. A few things have been found, (left ovarian congestion syndrome, chronic indeterminate colitis, 2 masses on my liver, chronic fatigue syndrome, nutcracker syndrome and others) but nothing to really explain why things got so so so bad. So I don’t qualify for much help. Finally, late December 2015, I was so sick, I’d been in and out of hospital for the last couple years, I couldn’t eat, and I thought I was going to die, and by then, I didn’t care.

My Doc tried some 'super bug' antibiotics, and 50% of my illness stopped within a few days!!! The diarrhoea had finally stopped!! For me this was a miracle. This year has been the best in almost 6 years. I’m still bedridden 85% of the time, weak, tired, in pain, nauseous and my heart has been weakened. But finally I can go out sometimes. I use a walking stick all the time, and a walker when I'm feeling weaker than normal, and a wheelchair on bad days or when i need to walk more than one block. I take 28 pills on a good day, as many as 38 on a bad day. But I believe I’m getting better :) Some of my Doctors believe I will never get better. Some think I will get to about 70% of where i was before I got sick in the first place. I have hope though. After all, without hope, what do we have?

So now you know a little about me…what can you do to help me, and where will your donation be going?

I need help now to put a ramp in so I can use my mobility scooter. My house has no ramp, just tonnes of steps, so I still can’t go out by myself. I would like to be able to go to the shop on my scootie, and regain some independence. I would like to get more physio. I get 1 visit every 2 weeks, and I’d like to get physio of some kind every day, so I can get better faster. Also, physio will help with my heart which is a bit weak due to the constant need for bed rest. I’d really like to work on that so I don’t have a heart attack. It’s unlikely, but with my body and heart so weak, its a possibility. I’d also like to fix my bathroom and laundry so I can use the shower (which I can’t at all at the moment) and on the bad days, comfortably use my wheelchair around the house, which I can’t right now. I have a couple of carers for a little while each day, but once my son moves out, I'll need full-time care, and I'd like to be able to pay for that so I dont get put in a home. I also need some counselling to get my head in the right frame. As you can imagine, chronic illness causes depression and anxiety. I would like to start reclaiming my life. But I need your help please to do this. Any help is appreciated. Thank you for reading about my life :)