Just introducing myself.
Posted , 10 users are following.
Hi there,
My name is Chonny, I'm 25 and live in New Zealand. Last year I was a fulltime single mother of a two year old (still am, just now she's three), studied fulltime, got a Diploma in Film and TV Production majoring in Documentary Directing and a Cert in Maori Performing Arts, outside of study I was heavily involved in a performing arts company and was working out regularly. I was barely still. Sometime in the second half of the year was when I started to get ill. My immune system has never been great so I've always had the mentality of just pushing through, However the fatigue didn't go away, accompanied by daily headaches. I'd just landed myself a part time job in the industry I'd trained for, it was an entry level job and prettyyyy simple. I only had to work a few hours a day but I was really battling with it. The drive home felt like I was leaving a 12 hour shift with a severe hangover.
I'd been to the doctor twice last year...she told me I had tension headaches and eye strain and prescribed me a whole bunch of drugs that make you drowsy (good one), anti-depressants and told me to go to the optometrists.
I ditched the anti-depressants, I wasn't depressed. I took the drugs. I didn't see the optom at the time because of costs. So I went back to the doc this year but this time I decided to try a different one as this one just wanted me out the door as soon as i stepped through it. My next doc asked me if I'd ever suffered from anxiety...yes I have. And that's all it took for her to become tunnel-visioned. More anti-depressants and a clinical psychologist "on a history of anxiety and clinical depression". I felt destroyed. Here I was, so hopeful I'd get an answer and I end up with that answer. Not at all saying that anxiety and depression are not something to take seriously because they totally are. But I KNEW that this was not the cause of my symptoms. I know the symptoms of anxiety, I've lived them. She'd got it the wrong way around, my "mood" was not causing my symptoms, my symptoms were causing my mood. Simple, yet I felt I couldn't tell her this for the thought of being ridiculed.
Annnyyywaay, I eventually ended up with the specialist I'm with now who understands!! And not only that, he started asking me if I had certain things going on, which I did. He got more bloods done that the other doctors hadn't and found that I was low in several things so is treating me for those. So I'm hoping that'll help. I'm only working one day a week at the moment but I'm struggling even with that. I don't have the mental focus to be able to deliver/drive. I'm thinking of leaving so that I can make this a time of healing. Does anyone have any thoughts on that? I'm still a bit up in the air.
My daughter is at daycare fulltime from 8:30am-6pm. During that time I'm mostly in bed, I worked out that I spend on average, 20 hours a day in bed. When I realised that, I thought to myself, ok that's a bit extreme and a bit lazy, I'm sure I can do a bit better than that... That day I tried to do a few hours of work and went to a graduation ceremony for a couple of hours that evening. I struggled the whole day and was destroyed by the time I finally got into bed at 9pm. lol. The next day I woke up feeling I'd been hit by a bus and also felt a cold coming on. Ohhh nope maybe it isn't laziness after all.
The weekend just past I tried to do a few things with my daughter as well. Low energy outings. It's Sunday night and I feel pretty bad, muscles are aching and the rest of it!
Guess I need to learn to accept that this is real and this time I can't push through in the way that I used to or it'll make me worse...that's probably the hardest part for me.
This post has been such a long vent! It was not my intention for it to turn into a big moaning rant! My apologies. If you made it to the end of this i have to say that I am surprised!! And very grateful that you took the time. But anyway, I look forward to meeting some of you and being part of a place where people understand!
Chonny 
0 likes, 33 replies
dawn97 chonny
Posted
take care dawn x
chonny dawn97
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Oh it has been quite overwhelming reading these responses from such understanding people. Your one almost made me cry! you've hit the nail on the head. Guilt. A lot of guilt. And I find I'm constantly analysing myself. If I don't do this because I'm too tired but then I try and do that, will people think I'm a hypocrite? Will they think I'm full of it? Blah blah blah. I think one of my biggest wishes is that people around me could fully understand exactly what it is that I'm going through so I didn't have to feel as guilty.
And what you said about letting yourself go! Also so true! I'm quite down about my weight. This time last year I was fit and in shape. Now I am overweight and in turn have lost a lot of confidence. Exercise has been something that I've really enjoyed in the past and training/playing sports with other people. It's hard for me to believe that I just can't do that anymore. Well not yet anyway.
And I was actually thinking about how I needed a haircut but my second thought was "oh who cares, it's not like anyone sees you when you're in bed al the time anyway". But you're absolutely right! There are some things that we can control and make us feel better (if only a little).
Thank you so much.
Just out of curiousity, how long have u had m.e for?
jackie00198 chonny
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chonny jackie00198
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Yes I found it became quite confusing.
And I think you are right about the job thing. I'm sad to leave as it is a new job and pretty much a dream job for me but I know the time is not right and there will be more opportunites.
dawn97 chonny
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chonny dawn97
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Well I did it! I woke up this morning and decided I would go and get a haircut and a treatment! Aside from having to sit in front of the mirror and stare at how big my gut has become, it was really good! It took quite a while so by the time I was done I couldn't get to my bed faster but it really does make a difference to how I feel.
And yes I was cancelling on my friends so often because I felt so ill. I think they thought I was depressed or something.
The chronic management course sounds great. I wonder if they have anything similar to that over here in NZ. I'll have to check it out.
And yes! I write things down when I go to the doctors because otherwise I forget everything. And I was consdering asking my specialist if he'd mind me recording our consultations on my phone because of the same problem.
I'm moving to a place by the ocean in a few weeks. And I think it'll be really good. It's a big building split into three seperate units and they treat it like a little community. Anyway the owner there is aware of my condition and is very supportive and says she knows someone who's been through this and blah blah, anyway she's been very caring about it and asks me if I'm ok and how I manage this and that etc which I think is really nice compared to most people's reactions. And we've only met twice! So it'll be good to be around someone who understands/ is supportive
dawn97 chonny
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Living by the ocean sounds beautifull that will help you I've no doubt ! Unfortunately I live in a built up area & won't be able to move for a very long time !!( we still employ 8 people & THIER lives depend on us keeping the business open the economy still stinks & this year has ment that we take a loss so the staff get paid ! ) I'm not even having a holiday this year !!!! Stress is the worst thing when you are ill & life is full of stress so we have to find a way to cope ,check out about chronic pain management because it does help you cope ! I wish you luck with your move just keep reminding yourself when the thought of moving scares the hell out of you it's going to be so much better for you in the long term ! All the best luv dawn x
Stolz chonny
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Can you recommend a specialist in Auckland? I've just had a terrible experience with a medical professional which is so much like yours it's not funny - I am young, fit and look fairly healthy, but have experienced a worsening and puzzling set of symptoms which started to scare me in the end. I decided to take some action and ended up seeing a specialist. I was dismissed with a recommendation to take medication and see a psychiatrist, with no attempt to do blood, adrenal or hormone tests for any physical underlying causes of my symptoms which were chronic debilitating fatigue, chronic insomnia, joint pains, feeling cold all the time, low body temperature, hair falling out, chest pains and numb hands and feet. I was made to feel bad for suggesting the professional look into what might be causing me to feel ill rather than just agree to see a psychiatrist after speaking with him. He was offended and angry and defensive that I had looked on the internet for some answers, and based his opinion largely on me breaking down and crying in front of him because I am so tired and run down and was hoping for some help. For someone to meet me for one hour and make this diagnosis based on me being distressed and crying, and looking at a copy of one general blood test which I took in with me, I thought was not kind or fair to me as a patient. The worst thing is that it puts me off seeking a second opinion even though I have read about this same thing happening to so many people who seek help.
jackie00198 Stolz
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chonny Stolz
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Wow, that sounds crazily close to home! I'm so sorry that you had to go through that, I know exactly how you feel and it's horrible!
But yes, where abouts in Auckland are you? The specialist I'm seeing is based in Epsom and it's been such a relief to have him! A good friend of mine suggested I go to see him as he suffers from Adrenal Fatigue and so I was talking to him a lot about what I was going through. The docs name is Dr Bernard Willis. He's quite pricy but at the end of the day it beats going round in circles with GP's any day. I think the initial consultation is around $240 and after that it's about $125 or something. When I told him what my doctor had said to me he pretty much laughed which made me feel like I was in the right place. He got me to do a whole series of blood tests (including some extra ones that needed to be paid for) and from those he saw that I was lacking in a bunch of things which my doctor did not pick up, he also told me I'd had glandular fever which is the trigger for CFS a lot of the time. He's given me a range of supplements to take, I do bi-weekly Vit D injections and will be getting iron infusions. He's also suggested the Paleo diet...which I have been struggling a bit with to be honest, love my food lol.
Let me know how you get on!
chonny Stolz
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Stolz jackie00198
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raliey79741 chonny
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I was diagnosed with CFS a while ago now, but have been without a good GP (unfortunately so many do not still understand the existence of the condition) since my last one left the practice.... just wondering reading you above comment; does Dr. Bernard Willis function as your general practitioner; or is he just a specialist?
Cheers
chonny raliey79741
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sally_14743 chonny
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my hubby went to see van de fries a renowned naturopath etc in London . He diagnosed him with CFS. Back in 2012.
But it was early this year he asked his gp to refer him to a CFS/M.E specialist in our local hospital . The gp felt there was no point , they can't do anything!!!!! Had to keep saying I would like to be refered anyway... So she referred him.
And on her first appointment being told he filled the criteria set out by
he said he just felt such a relief . He was officially diagnosed.
she has arranged for occupational therapists working with the m.e. Clinic to call and we had our first visit. Fantastic. They explained that there endeavour was to get him back to having 70 percent energy of what he used to have. And she explained as most people who get CFS have tended to be high achievers go getters in life your 70 percent will be a normal persons 100 percent. She talked a lot and listened a lot. And really ave some practical advice and medical. She said rule of thumb only increase activity by 2 percent each time. So if you walk to the corner of the road one day only walk an extra few steps the next time ... Not oh I will walk to the corner of the next street and then the next which is 50 percent ... 2percent and your body can sustain it.. So much info ... Lots about sleep and getting you to eventually having good sleep being key.
And my big eye opener . Was how do you relax.
As in switch off unwind. My hubby watches TV when that's turned off he puts his I.pad on then the computer, then the game console etc .. He doesn't just chill he has to be occupying his brain. She said you have to find a way of relaxing your brain as you are suing energy.she's given him relaxation tapes... But he does find sitting by the sea watchig the waves does switch his mind off. So wave tapes.. And we live by the sea ...so badger your gp and get referred .. Even if in NZ you have to travel to another hospital further a field .. It's worth it ....
jackie00198 sally_14743
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sally_14743 jackie00198
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