mystory

Hi everyone! I'm Aly, I have spina bifida and cerebral palsy, I want to spread awareness and tell my story. Any ideas on where to start or what to write about?? #SpinaBifida #SpinaBifidaAwareness . #CP
#mystory

My mother is the only person who cares about me and I treat her very badly. My mum is always pushing me to do better. Make friends and socialise, get a new job and make more money, get a new car, clean the house up and get a girl friend.

I don't know if my mum realises how miserable and sad I am. I blame my mother for all my problems and she blames herself. She is literally the only person who calls me to see how I am and I push her away swearing at her and threatening her. I think she called me "by accident" after our conversation crying and said it was a mistake. I should feel terrible about the way I speak to my mother but somehow it relieves me of a lot of my troubles.

I am putting all my issues on my mother and causing her significant stress. I don't know how she feels because its all about me. Everything is about me and my troubles. I feel bad about how I speak to her but I think it is more about pushing her away and completely isolating myself. Once I am completely isolated is when I really consider whether my life is worth living. Fortunately or unfortunately, (depends on which way you want to look at it) she will never let that happen.

She will call again tomorrow, sometimes I wish she would let me be but I would be no better off. I love my mother more than anything and she knows that. I got clean and straightened my life out for my family with my mums support. No matter how much trouble I caused her she was always there for me. I feel bad treating her so poorly but she brings the worst out in me.

I hope my mum doesn't feel like she has failed as a mother. I think she feels bad because I am not happy, hurting and suffering.

I think she just wants me to be happy. She is not stupid and can see that I am miserable and hates seeing me this way.

#mum #motherslove #NeverGiveUp #Support #alwaysthere #reallove #Family #Truelove #Care #caring #Love #chillout #calmdown #emotional #respectful #Myfault #ownership #notherfault #mystory #Decisions #onlylove #imwrong #help #sheltered #supportive #EverythingWillBeOkay #Hope

Sometimes things happen and we have no say in it. A strong wind makes a branch fall from a tree, and the branch kills some guy who was biking home after work. People die from a bee sting because they didn't know they were allergic , or antibiotics, or hair dyes, or they fall in a street hole they hadn't noticed.

One fateful afternoon I was walking on a small street towards the bus stop, I hadn't had time for lunch so I was chewing on some almonds. I saw the bus at the end of the street, and out of habit I started running to get it (buses were sparse and never on time). But I had forgotten about the almond in my mouth.

It went the wrong way, and for around 5 long seconds I thought that was it, my time had come, but then I was breathing and nothing happened. Not even a cough. But I felt really unwell, dizzy. I went home and later developed some weird bronchitis, it felt like a finger was pushing into my chest.

It took weeks of bronchitis to get any medical attention, and they confirmed that there was indeed a piece of almond stuck in my right bronchial tube. They also refused to take it out, saying "it will dissolve by itself". I was lucky it was just a small piece, maybe one sixth of an almond, one bite less and I may have died then and there, in that empty alley.

I had to treat aspiration pneumonia (aspiration bronchitis? because there was no pneumonia) for three months, but the sensation of a finger pushing into my chest never left. Breathing was OK, but singing was more difficult than usual and painful, and bronchitis was always there in some form.

Fast forward 13 months. I had moved to the seaside, not least to improve my lungs' health, and something else happened, This time it was somehow to be expected, but I didn't think, I couldn't imagine the far-reaching consequences of that small event. I had joined a choir, and we were singing in different places around the city.

For this one performance we were placed pretty close to an ancient wall, covered with spots of white fluffy mold. I had already developed a terrible allergy (well, CIRS really, that as the experts know, it's not exactly an allergy) to mold from a previous encounter with mold colonisation, but I realised too late that mold was so dangerously close.

When you sing you really breathe in air, in that case I breathed in mold, really deep down into my lungs. I started coughing right away, and asked to change place further away from the mold. The other choir members seemed unfazed. I went home afterwards and I kept coughing. I assumed it was an allergy crisis and didn't think much of it. I tried a lot of remedies I had with me (a full list is in another post) but the cough didn't stop, it was so strong it would shake me from head to feet.

One day at the end of week Two, I coughed the strangest thing: a perfectly spherical little ball (well, not perfectly, it seemed like one side had a small indent, I imagine where it was attached to some surface), the size of a pea,, cream coloured, but it looked solid, and really weird. After a day, another little ball. In a few days I coughed 6 of those little balls and I was getting really worried. Then one day, during a really long and vigorous coughing fit, I felt like I was going to suffocate with some hug chunk of mucus or something coming up from my chest. Guess who that was? I saw a whole group of those little balls, I counted another seven or eight linked together, and in the middle of that the piece of almond! I guess those cream-coloured (or rather, almond-coloured) things were produced by my body trying to digest the piece of almond? This was all very interesting but it didn't stop the cough.

After more "home remedies" (really strong stuff), I fell into a strange torpor and spent two days and two nights unable to get up from the bed, and for the first time in my life sweating so much that I had to change the sheets and/ or my clothing every few hours. At that point I started suspecting that I was not having an allergic reaction.

I woke up on the third day very weak but the cough was almost gone. Sadly some days later (again, the hand of Fate striking again?) I got the flu, and after a week the cough started again and it grew worse. It was a really strange cough, not productive at all, actually my bronchia had never felt drier in my life, all the airway up to the tongue felt dry and raw and scratchy and terribly itchy, I wished I could scratch my insides.

The chest in particular, where the almond had been, was driving me crazy, it was the same sensation as someone were tickling me with a feather, you know, some kind of Chinese torture, and it was constant.

On day 48 after everything started one strongest cough fit broke one rib, the second from the bottom on the right. Sleeping was already impossible because of the cough, but the fractured rib, convulsed by each fit, added an extra layer of agony.

Around the same time, the very dry unproductive cough finally produced something. It was a speck of jet black powder like substance, of the size of a small coin. I had read enough about mold to see this as confirmation that something was going on. A few more days, my first mucus plug (also typical in the presence of fungal infections). The day after, more black stuff. The inside itching was insane.

I had started seeing doctors since Day 30, but the non-specialists only diagnosed (usually just by looking at me, with their diagnostic superpowers I imagine?) allergic asthma appeared suddenly for no reason, or chronic bronchitis. They suffered, all four of them, from some strange hearing problem, they seemed to become completely deaf whenever I recounted my story, only to recover their faculty when it was time to collect their fee.

Clearly their opinion’s worth was directly proportional to the time it had taken them to form it.

I was pretty much abandoned, coughing black stuff day and night, and everything I was reading about Aspergillosis didn't bide well for my singing future. I had to try and save my lungs in some way. Still, I had no idea that the medical nightmare was just getting started. But that belongs to another post.

Hi, my name is Alex Hatch. I had a stroke when I was 10 & I never fit any of the normal molds with my disability. If anybody has ever felt this way please reach out to me. I would love to exchange stories with you & let you know that you are not alone.

#TheMighty #mystory #Stroke #PediatricStroke #advocate

She took me for some food as I knew I wouldn't be able to eat once we got to the hospital. I rang the hospital at 6pm who told me to come in as they were too close together, I went to the hospital, at 4:25 am on little peanuts due date he was born at a 8lb.

The first 4 weeks of him being born was difficult, I lost a lot of weight (even though I didn't gain much during the pregnancy) I had mood swings, too emotional, too tired, I gave up college to be at home with him as I was still getting use to being a mum and getting into a routine. Little peanut was very clingy, hated being put down in a crib or moses basket, being sick after every bottle, constipation and it turned out he hated night times! Being miles from my family and not having support around me made it very difficult to cope with.

At 4 weeks old, I was alone, trying my hardest but it didn't seem good enough, I was stressed out to the max, I had enough, I went to the doctors and they diagnosed me with post natal depression, I was relieved! I wasn't going mad, and it wasn't my fault and to be honest I was doing fine being a young mum but my mind was playing tricks on me. I got the help I needed and moved out to live with my mum and dad for help. After moving in with my mum and dad I started getting back to being me, and sorting myself out. I learnt to cope with my depression by allowing myself breaks! I know it sounds silly to others but having a very clingy baby who wouldn't let you have a shower for 2 minutes or eat a full meal without crying it's hard.
I still had depression and medication but I was starting to feel like myself again, I was able to be me finally! I was still going through complications in my life and events but having a mental health problem you have to think about you and your little one.

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