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Hello Again

02.22.17

Hello again, it’s been a while.  So long in fact, that I’m not sure anyone will even read this, but for those of you that might, I wanted to explain my absence.

As you may know, I have been struggling with health problems for a few years, since just after the birth of my youngest daughter really, so nearly four years now.  It isn’t something I talk about much here because that’s not what this blog is about, however, I do mention it from time to time because unfortunately, it is part of my life.  I also feel that it is only fair to be honest, after all, real life isn’t all sunshine and roses.

I have seen quite a few doctors and had a great deal of tests, without any answers.  And despite, trying various diets and supplements under nutritionists, things proceeded to get worse last year.  I was referred to a rheumatologist by my GP in April and finally saw him in December.  He diagnosed me with fibromyalgia, in his words, he could tell me what I didn’t have but not what I did.  During his examination, he said things like “are you sure it doesn’t hurt here”, er yes, I’m sure!  I knew that I didn’t really fit in to the fibromyalgia box but he desperately tried to squeeze me in to it.

I returned to my GP, and told her that I would accept the diagnosis but I wanted to see a neurologist first, as so many of my symptoms are neurological (tingling, numbness, muscle twitches), that I needed to have anything more sinister ruled out.  She agreed thankfully.

So in January, I saw the neurologist, he gave me the first glimmer of hope that I might get some answers, said he thought I was “auto-immuney” given my history and ordered multiple blood tests, an MRI and nerve testing (fortunately private health cover meant I could get this all done).

And that is the reason I haven’t been blogging, my life has effectively been on hold whilst I waited for the results.  I know that putting your life on hold isn’t necessarily the right thing to do, but I just couldn’t bring myself to talk about anything seemingly mundane here whilst all the time in the back of my head I was wondering whether I might have multiple sclerosis or some other incurable neurological condition.

Anyway, on Friday last week, I got my results.  It should have been good news, and it was in a way, all my test results had been negative, except some minor damage to a couple of nerves in my arms (a bit like carpal tunnel but in the elbow).  But I still cried a great deal as soon as I walked out the hospital, because I still don’t have any answers.  I thought that knowing what it wasn’t this time, would be enough, but it isn’t, I’m still scared.  Scared every time I get a new symptom, scared the doctors have missed something sinister, because I know it isn’t right, a person shouldn’t feel the way I do.

However, life has now resumed, because I can’t just keep waiting until I carry on living again.  So I’m back here blogging, and I’m back looking for answers.  I haven’t lost faith that one day I will feel ok again.  But in the meantime, life goes on and I’m going to do my best to appreciate all the simple quiet pleasures again.

See you again soon.

Emma x

44 comments on “Hello Again”

  1. I cried reading this! I am in the exact same boat!! I have had issues since my 9 year old daughters 1st birthday. They have been getting increasingly worse every year and despite all of the Dr. visits and tests I have no answers. I went to a naturopath for awhile but it got too expensive and not enough results. I M frustrated and heart broken and walked away from my blog as well. I have nothing much to say except that you are not alone. Also, I appreciate you sharing so I know I’m not either. A hug from me to you! XO

    1. Hi Nicolette, I am so sorry to hear that you are suffering too. I hope you don’t give up searching for answers. I read everything I can, and am currently researching Vitamin B12 deficiency. I don’t know your symptoms, but it does seem to be the cause of a great deal, so might be worth investigating. I wish I could offer more help. Emma x

  2. It must have been incredibly hard to write all that down, but you have done it in such an open and heartfelt way that it really resonates. All the waiting and uncertainty is agony, and the feeling that you can’t begin to fix the unknown. Having followed your beautiful Instagram feed, I hope those peaceful moments give you as much pleasure as they do to all the people who follow you. Thank you for being so honest about this – it is inspiring. It’s never good to hear that someone is struggling but it is always lovely to hear the human voice behind the screen and I really hope life looks out for you, even if its just in the small things at present. xx

    1. Thank you so much for taking the time to comment Georgina, and with such kind words. I think it is important to be honest in a world of aspirational living, where we are constantly inundated with ‘perfect lives’. It can put a lot of pressure on people when they think their lives need to look like that, reality is important for that if nothing else. Emma x

  3. Hi Emma, I’m sorry you’re still feeling unwell. I don’t know why but I wondered if anyone had investigated Lyme disease as a possibility? It can have longer term affects similar to those you describe. I wish you well soon x x x

    1. Hi Emily

      I asked me to be tested and was at the end of last year. The test came back positive and I was thrilled as I thought I had an answer, but they sent the sample off for further testing and it came back negative. So I was told it was a false positive. I have however just been tested again and am waiting for the results. Thank you for mentioning it. x

  4. Thanks for sharing, health can be really hard to talk about. I’ve been in a similar place of desperately trying to get answers and being cheerfully told that everything has come back “normal”. Great, but where does that leave me!? So I feel for you, and I really hope you find some answers soon. Just know that next time you’re crying after a doctor’s appointment, you’re not alone. After my last appointment I came home and hid under a duvet for the afternoon, I can highly recommend it! 😂
    All the best xx

  5. Hello Emma,

    I just wanted to give you a hug compassion. I understand completely what you’re going through. I’ve been labelled as having fibromyalgia and chronic fatigue and have been off work for a few years now. The doctors think that there is something larger neurological going on given my symptoms [for body pain, constant muscle spasms, nerve pain proprioceptive problems, fatigue) but despite many tests and MRIs haven’t been able to find any answers. I understand how frustrating it is not to know what is going on. And how scary. Especially when you can’t find anything to help. And it’s hard to be brave and strong all the time. I’m sure you have a good support group, but if you ever need anyone to listen, I humbly offer my ear.

    1. Thank you Lisa, you are very kind. I’m sorry to hear that you are suffering. I am sure you have investigated it, but I am looking in to B12 deficiency currently. I’m not sure where you are based, but the acceptable levels in the UK and the US are deemed to be far too low, and it is possible to experience symptoms like ours but still be in the ‘normal’ levels.

  6. I do hope you get the answers you need soon. The not having an answer must be very difficult. We don’t know what life will throw at us, so grab it, with both hands – in whatever way works best for you. x

  7. Oh Emma, I’m sorry to hear that you still don’t have all the answers; here’s to ploughing on though and know that you can share and we will offer our support from however near or far we are x

  8. dear Emma I am so sad to hear you are struggling with ill health. I suffered for many years with symptoms which included cramps, fatigue, aneamia, inability to gain weight, panic attacks, multiple miscarriages and twitching. I repeatedly visited doctors who told me they couldn’t understand my symptoms or who told me I had depression and should take iron supplements. Around eight years ago I had a doctor who asked me if I had been tested for coeliac disease. The results came back positive so I had a gastroscopy and they confirmed that I did have coeliacs. To finally receive an answer after so many years of not knowing why I had no energy to be able to keep up with the demands of a young family was such a relief. I hope you are able to get to the bottom of it all soon and that you are able to find some comfort in small blessings. Keep hoping. Much love Chantal

    1. Thank you so much for taking the time to comment Chantal, I am so pleased you found your answer. I hope that you are feeling better now having cut out gluten. I was told that it is likely I am coeliac but I had already stopped eating gluten and the specialist said not to reintroduce it, so I don’t know for sure. However I don’t think it can be the only issue for me given I am still symptomatic. Your story gives me hope though, that with persistent I will get there one day. Thank you. Emma x

  9. I was just about to mention vitamin B12 deficiency, then I saw you are looking into it. It’s definitely worth doing so as it can cause a lot of neurological symptoms.
    My stepdaughter has just been diagnosed after suffering extreme fatigue and feeling low, combined with the stomach problems that have plagued her for years. She blamed the tiredness on her busy job for ages, but in fact her levels were extremely low.
    She’s just had a course of injections and is already feeling better. She mentioned it to me as I have neurological symptoms (nocturnal epilepsy), painful joints (which has been diagnosed as psoriatic arthritis, so again auto-immune) and am always exhausted, so I will be interested to see how you get on.
    I really hope you find the cause and begin to feel well again.

    1. Thank you Nancy. It is very interesting to read about your stepdaughter. I am so pleased they have hopefully found the cause. I have just started supplementing, but I am looking at privately having injections too, because I’ve heard with neurological symptoms they are most effective. If I was you, I would ask to be tested too. Thank you so much for taking the time to comment. Emma x

  10. Hi Emma , thanks so much for posting this .Sorry that you are going through this.
    Weirdly , i have been experiencing the same thing also since i had my youngest 4 yrs ago. Although i have fluctuating iron levels (always have had) and at this time of year i am often vitamin d difficient making my calcium levels low, all other blood tests are ‘normal’.
    I was also referred to a rheumatologist with the doctor thinking along the lines of fibromyalgia but i have to admit ….i cancelled the appointment . At the time i felt like as soon as i was going to the doctors having tests etc that (like you) my life became on hold.
    i decided to go to a reflexologist for a bit which was amazing but i can’t keep up with the expense of it , i hope to go back when i can . The things that really hit home when i saw her was that she talked about my ‘third eye’ gland (the one thats at the front of your head .. can’t remember what its called) being really out of rhythm , it controls all your hormones making sure the right amount goes to the right places. this made sense for me as it had been since having a baby that my symptoms had appeared in this way and this has a lot of effect on other areas. she also picked up on my tummy troubles , i don’t know if you have this as well as your physical pains etc but its a big symptom for me .
    The tingling down both arms , numbness , pain , hormone issues , feeling utterly wiped out etc is very difficult to deal with.
    anyway , i probably haven’t made any sense , i even find trying to explain myself quite difficult nowadays but i do try to be kind to myself and remember that i just can’t do everything all of the time .
    I think the main worry when we go through illness that doesn’t quite fit into any of the boxes is that ‘they must be missing something’ .
    I do hope you can find something that helps you and when you do …let me know ! xx
    much love xx lucie

    1. Hi Lucie

      I’m so sorry that you have been suffering too. We definitely seem to have a cross over of symptoms and it is very interesting to hear that reflexology helped you. For me, fibromyalgia is such a meaningless diagnosis anyway. It is the cause that needs finding so it can be treated in my opinion. The other problem is in this country, what they deem normal levels are not always the same as in other countries, this particularly applies to vitamin b12. It is something I am investigating further, and it might be worth you looking at too. From what I have read, you can be symptomatic at levels of less than 500. Mine were 312. But in this country, they don’t treat you unless you are less than 200. Anyway it is just a thought. Take care and I hope you find answers soon.Emma x

  11. So sorry to read this. I love your blog and see you often around the Dials. Good health is worth more than anything else in the world. I do hope you get some answers soon. I also understand how you may want to put everything on hold but I am glad you are not on pause at present.

    X

  12. Thank you for sharing this. You are obviously a very intuitive person, who knows her own body, seeking answers is instinctive. I hope you will feel more hopeful soon with the onset of Spring to lift your spirits and provide some peace of mind x

  13. Emma I’m so sad to hear that times are tough and that you still don’t have answers … I don’t know what it’s like, but motherhood is no walk in the park without any health issues, so adding that to your everyday must be very challenging. Please let us know if there’s anything I can ever do for you. I see a naturopath here in Canada, if u ever need me to ask her questions just let me know!
    Wish I were closer and could help you out. Lincoln could occupy your girls all afternoon while we have tea! Hehehehe
    Kisses xxxx

    1. Thank you for commenting and for such kind offers. I have a couple of things to look in to, thanks to people commenting on this post, so it is a start, keep your fingers crossed xxx

  14. Oh Emma, I’m so very sorry that you didn’t get the answers you needed for peace of mind. Just keep advocating for yourself. I hope you find some answers and this online community has done wonders when I was in my darkest hours. Thank you for your shared honesty. Xo

  15. Emma I so admire your strength and resilience and I’m so sorry you are suffering like this. Sending so much love and light your way lady xx

  16. Hello dear Emma,

    I just recently discovered your instagram and blog. Your story touches me deeply, because what you describe, reminds me of the things my mom went through. She was ‘diagnosed’ with chronic fatigue and ‘fibromyalgia’ , but she always knew/felt something else was going on, and kept going from doctor to therapist to natural healers, you name it, she did it -trying diets, b12 injections, antibiotics for a year, alternative remedies, supplements, never giving up… Anyways, you will most probably NOT have what my mom eventually had, but I would had appreciated it if someone told us before to look into Khaler’s disease. It is perfectly curable in an early stage. But for my mom, the right diagnosis of Kahler was made after 20 years, which of course was too late. I am very aware that my mom’s story is certainly not yours, at all. But knowing what I know now, everything would have turned out so differently. So that is why it is just advisable to maybe rule this out. By no means I want to scare you, I have been doubting to post this comment for a while now…but I just want to be of help. Wishing you all the best, and I really hope that you will get the answers you need soon.

    1. Hi Liesbet

      I want to say thank you so much for having the courage to comment about your Mum and her eventual diagnosis. I am so sorry to hear that for her the answers came too late. I appreciate greatly you informing me about Khaler’s and it is something I will now look in to. Thank you once again.

      Emma

  17. Hi Emma. I did reply to you on Bloglovin. Not sure if you have read my comments. Hope you feel better soon. x

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