Just introducing myself.

Brain and nerves
1

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 smile

2

Hi Chonny I've had CFS / ME all my life and tried everything. It's stress related and effects sensitive people. Take vitamin D with magnesium and calcium for a miracle cure. It saved my life. 

3

Hey Chonny, David from Scotland here. I'm 6 months into my CFS. In the beginning i was very unwell mid Nov2013 viral like symptoms although i have tested negative for EBV, glandular fever, hepatitis etc Since Jan some of the symptoms dissapated but i was left with the deep fatigue which can get really bad where i find it hard to walk. Prior to this i was a trithlete 6 years. I've phoned for an ambulance twice for the first time in my life as i felt like i was dying, really i thought this is it, my heart is about to stop. But here i am. That's the hit by a bus feeling.

I've realised we cannnot puch through this pacing is crucial.I too thought i has been lazy, try to do more and end up worse. So my attitude is not the problem and neither is yours. All i am doing is pacing, eating really nutritious food and recently started acupuncture and herbs. Hoping for that miracle and for the nightmare to end. I had to stop work in January, as it was very demanding working in a warehouse with lots of heavy goods. Take care, this message has drained me. confused

4

Just to say i am 34.

5

Hi a really good web site is 

www.actionforme.org.uk have a good look at it lots of good advice. 

My husband has CFS and he was also faced with the chicken or the egg with depression. He also worked out he was not clinically depressed just low in mood due to having CFS.

my husband has occupational therapists coming to our house tomorrow they are attached to a CFS/m.e clinic in our local hospital . They are going to sit with him and work out with him daily routines thar will enable his body to recover ... Will let u know if they have any gems .....

6

Hi chonny , we completely understand how you feel so please don't think your moaning ! I to feel as if your bus comes to WALES & runs over me most days !( haha amazing how far that bus travels haha !!!). Keep trying to get some answeres from your drs but don't be to hard on your self. It's no way your fault  ! The guilt of not being able to work, look after children , clean house , cook meals & be a good wife ( all the things we've managed without problem before illness !)  is all too much !!!we have to learn how to accept the new you ! & not spend the little energy we do have blaming ourselves ! Pacing your day is a must ( read up on this it works !!)  make time for yourself ( get a manicure , haircut ,new outfit !) you need to feel your not letting yourself go ! I think that's important , you have control over how you look & that proves your still you !!! Try not to worry , its a challenge but please know there is life with m.e./ c.f.s / fibromyalgia ( they are my views hope they help !?!?) 

take care dawn x

7

Hi David try vitamin D, magnesium and calcium, one allows the other to work. I read that people are misdiagnosed with CFS and that a deficiency of these are the problem. Go to you tube and type in vitamin D deficiency and see all your symptoms under that heading. I've had ME all my life and my fuzzy heads, migraines, sensitivity to light, smells, and noise plus the malaise and exhaustion have disappeared since I started taking these supplements. I was wheelchair bound often bed bound and often didn't want to carry on living with ME, now I'm normal after one month ! Can't believe it free at last. 

8

Hey, Chonny--Anyone with your symptoms (possibly from CFS/ME) could be depressed and anxious. I'd never had a problem with either until I'd had CFS/ME. I refused to see docs who made my illness about the anxiety and depression. It was not! Also, I think it's a very good idea to leave your job for a while and get the rest you need. 

9

Hi Fran,

All your life, gosh I can't even imagine that! You must be a warrior! 

Yes my specialist has put me on Vitamin D tabs, Magnesium tabs, B12 injections, liquorice root and iron infusions so I'm hoping for a miracle smile

10

Hi David,

Thanks for your reply. It's such a great experience for me to hear from people going through the same thing. I can imagine how hard it must be for you to submit to this after being a triathlete for so long. Sometimes I have dreams that I am going for runs or working out and that I feel great! And then I wake up.. lol. 

And that's so crazy that you mention the ambulance thing. Just the other night I was lying in bed and in my head I was thinking, "okay just get ready to call an ambulance before you pass out." lol. I felt so strange (more than usual), paralysed (that happens sometimes), heart racing, feverish, arms felt like they were heavy but at the same time felt like they were floating. I often have this happen to me but this time it felt pretty extreme. 

I've never tried acupunctire, how are you finding it? I'm taking a bunch of supplements that my specialist has given me but I still need to change my diet. I'm finding that the hardest thing as I love my food, especially now that I don't have the energy to do anything, it's comfort food really. Which I know is totally counter productive. 

Hope you got a good rest after your response smile Really appreciate it.

11

Hi Sally!

Thanks for that, I'll be sure to check it out. 

Yeah I think I found it most frustrating that my doctor wouldn't listen when I presented her with my list of symptoms, just said we were "in the early ages of treating my anxiety". I was so disapointed that I broke down in that consultation, which in her mind just made it concrete that she was right.

Oh that'd be great thank you! I hope that it goes well for him, good to hear that he now has the right support that he needs. 

12

Hi Dawn!

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? 

13

Hi Jackie,

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. smile

14

Hey Chonny. I liken the times when i called an ambulance was as if my entire body was turning to stone. Not to mention i feel so lifeless my heart is about to stop. I am really enjoying the acupuncture and have felt more relaxed about it. It's a challenge for me to get there but i have to make it in the hope of regaining my health. I do think it is working but it has only been 2 weeks, so watch this space ! Apparently the clinic has a 96% success rate.

15

I know former oylmpic champion triathlete Emma Snowsill got CFS a and she used acupunture to ge herself back, other athletes use it and they wouldn't if it was hogwash.

16

Hi chonny . I've had fibromyalgia 14 yrs ( ill for ages before giving up work )  I've been  different ill this last few yrs & now I'm told its m.e. Also !! The difference is even more exausted than the last 14 yrs !!!  I've missed work so much ( I'm a hairdresser !!!!) I've still got my salon a manager runs it & my husband. Does all the money & running around !!! It's taken so long forme to except the way I am & really hope you won't take as long because punishing yourself won't help you any !!!!  I've found it hard to keep my wieght down I'm 24 lbs heavier now than 2 yrs ago & at the moment attempting another diet this time low carb ( it has made me feel a lot less bloated !)  it's only been a week so no idea if I'm loosing but I live in hope !!!! It's so easy to say why bother ! Last week I couldn't make my appointment to my own salon & I'm desperate for a colour !!!! But I will go this week I'm not giving up. !!! So don't worry if it takes a few attempts to do things it's important you feel that you are important !!!Please know that we understand how you feel but others won't  !! Most of my family still think I'm faking it !!! My friends have stopped calling & I'm not supprised ! I can't tell you how many times I've said I'm going out with them only to get my husband to ring last minute & cancell !!!!!  I say to people if my pain & exhaustion were blue you'd be looking at a bloody great  smurf  !!!! Haha !  The best thing that helped me come to terms was a 12wk 1afternoon a week chronic management course  ,  I went on this 8 yrs ago & still meet up with 2peolpe & THIER partners for lunch every few weeks & even had a weekend away with my pain gang !!!!  That's what I've named us ! It's good for our other half to talk to spouces  that understand because they live with these illnesses also! I hope you can get some help in that way they help you come to terms with & make the most of your life !!!!  Take this one step at a time don't try to do too much ! & make yourself herd at the drs !write things down not to forget ( brain fog!) & take someone with you to remember everything that's said ! Don't worry ! & don't feel guilty ! & good luck ! I wish I had known about these things yrs ago I had no idea & nobody to help so please know there's help out there !! Luv dawn x

17

Ughh!! That's so scary! What kind of feedback do you get when you go into the hospital? I get a little worried sometimes as I have a three year old daughter (just her and I live together) and sometimes I feel like I'm paralysed and I'll vaguely hear her calling me and what not but I literally can't respond to her. Or if I can it's really hard work but I often can't move either. I will talk to my specialist about this. Let me know how the acupuncture goes! I'm open to trying different things, well with the limits of finances lol. 

18

Wow, that's a long time. Sounds like you have a supportive hubby smile 

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. smile

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 smile

19

Hi chonny , I'm so pleased you felt better about yourself after a haircut !  Try to remember  your a  person that's ill  &  it's not your fault !!!  So you deserve a treat. Every now & then  !  Remember  that  ! 

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

20

I think that acupuncture does help some people with CFS. Just as with all the meds and other stuff, it doesn't work for everyone. It's worth a try, because unlike meds, if it doesn't work, there are no side effects.