A Fashion Blogger With M.E

a fashion blogger with M.E

There are a lot of you out there who have followed my fashion blogger journey since it began in 2010, which I am incredibly grateful for, and there are so many of you who joined me a couple of years, months, weeks or even a few days ago. Since my blog is so personal to me and I feel like we have built up a little community here which I trust and feel safe with, I wanted to explain to you something about my life that I have kept hidden from my blog all this time. This wasn’t because I didn’t trust anyone or because I’m ashamed, it was mainly because I wanted to make sure I could succeed in doing what I wanted to do without any sympathy votes or without it having an impact on my progress. 5 years have gone by now and I’m ready to explain things to you all, now that I know it wont have an impact on my blogging life and work.

I have M.E. Kind of similar to CFS (Chronic Fatigue Syndrome), but a lot more symptoms are involved.

I started getting ill with glandular fever when I was about 12/13 years old and after months, it had developed into M.E. I was going back and forth between hospital and doctors appointments for just over a year, trying to figure out what was wrong with me but after countless tests, studies, examinations and everything else, nobody really knew what was wrong. I found another doctor to visit and she ended up being my life saver. After a month or two of seeing her, we found out that I had M.E and that’s what was causing my problems and making me so ill, tired and sick all the time. It wasn’t until I was almost 15 that I was diagnosed, which was a crucial age for me with my exams coming up in school.

I actually ended up missing half of my last year of school, I missed most of my GCSE exams and was graded mostly on my coursework that I had managed to do. Luckily for me, I still got quite a few good grades which was helpful, but it was such a horrible time for me. Missing so much school because I couldn’t get out of bed or function properly was a disaster. I was a tomboy growing up which meant I lived outside playing football, basketball, riding my bike or skateboard etc and I wouldn’t have had it any other way. So having that stripped away from me which also meant that I lost a lot of my friends was the worst time of my life. Things truly got so bad back then that I was at my wits end and I spiraled into severe depression and anxiety. My current living arrangements back then didn’t help me at all, but my mum and dad have always been extremely supportive, as well as my nan and grandad, so having people around me who cared for me really did help me pull through those dark times.

I’m 27 in a couple of weeks so I have had the M.E now for almost 14 years, but I will say as time goes on and after pacing myself correctly, learning to cope with it, knowing what I can and can’t do etc really does help. I mainly wanted to make this post to let other people with M.E out there know that it’s not the end of your life. I met someone online a few months back who is having the worst time with her M.E right now, but I want so many of you to know that it will get better. You may not feel like it will, and gosh knows all those years ago when I couldn’t get out of bed I didn’t think it would, but it does. I promise. It just takes time and patience and that amount of time varies from individual to individual. I’ve met people who got better in 2 years, I’ve met people who only started to feel better after 20 years, and a whole range in-between. But the outcome is the same and that is that it’s not forever. Learning this is what got me through. Staying mentally strong is important.

What is M.E?

For those of you who haven’t heard of M.E or may have heard of it but don’t know what it is, I will explain. M.E (Myalgic Encephalomyelitis) in simple terms is a form of an inflammatory brain problem and an imbalance of brain chemicals. This is usually in the form of an injury to the Central Nervous System caused by disease, chemicals or an over stimulated immune system (mine being the latter, from the Glandular Fever).

Even the slightest problem with a brain function can cause severe issues as I’m sure you are aware, so when a huge part of it is imbalanced and upset, the body doesn’t function like it should at all unfortunately. It effects the entire body, including every system you have, from hormonal production to psychological and physical abilities. Unfortunately there is no cure for M.E and you can’t just take a tablet to fix it (maybe in the future you might be able to) so you have to learn to live with it and pace yourself to make the days easier.

Symptoms of M.E

There are so many symptoms of M.E that the list feels like it’s endless, but I will list the ones that I have and have had over the 14 year journey with it so you can understand a lot more about it. I will though be breaking this series of posts down into 5 or so posts so I can cover each topic in more detail and not create one huge post which is too much to read. So I hope you will understand more about it all by the end of the series. There truly are so many more symptoms, but I have listed the main ones.

Fatigue and exhaustion:

The main symptom of M.E is persistent physical and mental fatigue (exhaustion). This doesn’t go away with sleep or rest and limits your usual activities. It’s not the usual tiredness which you get at the end of a long day, it’s debilitating tiredness and exhaustion to the point of not being able to move.

Neurological signs and symptoms:

Inconsistent central nervous system function causing vertigo, disequilibrium and proprioception difficulties (e.g. lack of sense of ‘up’ and ‘down’ with eyes closed resulting in sickness and dizziness) – I also have a poor balance sometimes and excess sweating.

Temperature dysregulation and poor tolerance for hot or cold environments – meaning I can’t go from a warm building or car to a cooler place without shivering and reacting badly to the climate or going from a cooler temperature to some place warm without having a hot flush.

Hyperacusis (sensitivity to noise) and photophobia (pain/relapse on exposure to light) – this is especially on bright days, my eyes feel explosive and the noise causes me pain and distress. Especially high pitch.

Pain and pressure at the back of the head (where the head meets the neck) and behind the eyes – this gives me really bad headaches often and I also suffer migraines at the front and pressure problems.

Stroke-like or coma-like episodes – this is one I will be covering in depth fully in a separate post as it’s one I suffer with badly. It’s not exaggerated, it actually does happen.

Sleep paralysis, fragmented sleep, difficulty initiating sleep, lack of deep-stage sleep and/or a disrupted circadian rhythm – I used to suffer badly with sleeping problems, but now I am not so bad. I do have ectopic heartbeats though.

Vascular and cardiovascular signs and symptoms:

A very high heart rate, chest pressure, heart pain and a fluttering/straining heart – I have this frequently. Sometimes there are bad episodes where it wont stop fluttering or beating really fast, but I do manage to try and keep it controlled.

Very low blood pressure particularly when upright, orthostatic tachycardia/POTS and reduced circulating blood volume (up to 50%) – this is very common with me. My blood pressure is low most of the time, coming in at around 96/65 or so, but this is normal for me. My blood circulation isn’t great and if I mark or scar, it wont heal for a very long time and I have Reynauds from it, so permanent cold hands and feet.

Pain/discomfort/poor digestion following meals – this is an everyday battle. I developed many food intolerance’s and allergies over the years, leading me to go really skinny at one point and become really ill and malnourished since everything I ate hurt. I still suffer with the pain and problems now.

Muscular signs and symptoms:

Muscle weakness and paralysis (affecting all muscles including the heart, eyes, digestive system etc.) – this happens to me a lot. I can’t lift anything heavy, I can’t keep my arms raised high for long as the pain is bad, if my body decides its done too much, it will disconnect some limbs from its function. For example I can’t feel anything but a dull ache and pain in my legs and I can’t move them. I used to get a full body paralysis, but mainly now it’s waist down. These are temporary.

Muscle pain, twitching and uncontrollable spasms – this is common for me. I jerk and spasm a lot, often jolting my head or making a rapid arm movement. But the muscle pain is often something I battle daily.

Difficulty breathing and air-hunger – this one isn’t as common, but I have had it. Sometimes breathing is a struggle as you take deep breaths but they feel like shallow ones. It’s hard to explain.

Cognitive signs and symptoms:

Word-finding difficulty or difficulty or an inability to speak – not so much anymore, but years ago this was a big problem. I couldn’t think, take anything in or find the correct words to speak properly.

Difficulty comprehending speech or delayed speech comprehension – again like above, listening was difficult. At school I couldn’t take things in and still sometimes now, listening to voices is hard to understand fully what’s being said on a bad day, especially on a telephone.

Difficulty making new memories and recalling formed memories – there are times when things are bad that I can’t remember anything, I can go to another room and forget what I was there for within a minute. Sometimes old memories are gone completely and I can’t remember things I have done, but this is a lot better for me now. I would say 95% better.

Anxiety and depression – this was a huge problem for me, but I will cover it more soon.

Other symptoms:

Nausea, vomiting and feeling ‘poisoned’ and very ill – this was extremely common for me years ago. I would feel sick all the time and really ill, much like food poisoning. I do feel nausea still now, quite often, but not as extreme thankfully.

Throat and gland pain/tenderness and chills – my glands in my neck are permanently raised, they have been since I had the Glandular Fever, and often they get sore. I get store throats a lot and shivers.

Food allergies, alcohol intolerance, hypoglycaemia and sensitivity to common drugs/chemicals – I’m sensitive to foods, chemicals, medicines etc. I can’t be around smells like nail polish or perfume as they make me sick. Deodorant has to be a roll on (the same for everyone in the house) and a lot of things my body can’t handle. I can’t have lactose or corn flour, I struggle with acidic foods, I don’t drink alcohol and more.

Rounding it out

A lot of people with M.E are housebound like I was for a long while, and a lot of them can never gain back their pre-illness activity level. Learning to cope with this is the most important thing. You have to accept that things will not be the same, but you start again. You make a new lifestyle for yourself. You don’t let it get you down. I may never be able to play sports again like I used to, but now I don’t let that bother me. I enjoy doing other things which require not as much effort. It’s a pacing and staging situation where you do only what you can and you keep that as a routine, then as things get better, you slowly add new things in and increase. This has to be done so slowly though, over the course of years, because if you push yourself too much, you relapse. I know this only too well as even today I still will get paralysed, in a lot of pain and cause myself sickness if I have done too much. You have to know your limits. The worst thing is that you wont be effected from the exhaustion until 24-72 hours after. This often causes you at first to not realise what your limits are and if you have done too much as there’s no immediate notice, so getting the balance is tough.

Like I mentioned above, I will be writing individual blog posts on specific symptoms that I suffered or still do suffer with now, including the anxiety/depression, paralysis, tiredness/exhaustion, muscle/body pains and also the intolerance’s and sensitivities. Hopefully this might give you some understanding to the illness, maybe you might know someone with it or if you struggle with it yourself, I just hope it can help some of you out there. You can find out more about M.E on specific websites like this one too. Lorna xx.

Follow:

67 Comments

  1. June 30, 2015 / 2:02 pm

    I’ve never known anything about M.E. You seem like an incredible person and it’s amazing that you wanted to share this <3

    • June 30, 2015 / 5:57 pm

      Thank you so much. I appreciate that!

  2. waldherrro
    June 30, 2015 / 3:14 pm

    Wow Lorna, you’re so brave to write about it! I’ve followed you for a few years now and I’ve noticed sometimes you’re not as well, but I never actually gave it much thought (mostly because it’s something so personal that I would never ask you what you have). I love how strong you go about it!!! I’ve been sick since April, we don’t know with what…the only answer I get is that it was a virus that left repercussions, but that doesn’t help much…some days I can’t even get up and am extremely tired and with pain, sometimes even fever…but I try my best to be positive and reading your story and seeing what you went through and how you deal with it is giving me even more strength.

    Thank you so much for sharing your story with us!!! And I’m so glad you feel you can trust us enough to share something this personal!

    xoRosie

    • June 30, 2015 / 5:59 pm

      Thank you so much Rosie! I always love reading your comments as I know they are heartfelt and you really care about what I publish, so thank you for that. I’m so sorry you are going through illness too, your symptoms sound really similar to me actually, especially if it’s something you got after having a virus. You can always email me if you want to chat, I’d definitely be happy to offer my support to you! xx.

    • June 30, 2015 / 6:01 pm

      Thank you so much for your support. It means a lot!

  3. Steven W
    June 30, 2015 / 6:13 pm

    I think it’s wonderful that you’ve been able to follow your dreams, achieve all that you’ve achieved and work in a field that you love so much amidst such unfair obstacles being thrown into your path. Your determination and strength of character is an inspiration to all of us. Even without taking your illness into account I already reckoned that what you’ve done with your life is pretty impressive anyhow. πŸ™‚

    Thank you for sharing this. I found it a moving read and I think you’re absolutely right that a community has built up here. There’s such a great vibe. Anyway, you have my sincere respect in bucketloads.

    On a lighter note, I’m not exactly struggling slightly to picture you as a tomboy but it’s quite a surprise to read that. πŸ™‚ Sounds like you spent your childhood doing all the things that I tried to avoid doing when I was that age. πŸ˜‰ lol

    • June 30, 2015 / 6:17 pm

      Thank you so much Steven πŸ™‚ I was wondering what comment you would leave and how you would respond. It’s really nice to hear your kind words. I definitely was a tomboy, I lived in boys clothes and I even had inch long hair, so boy hair. Crazy how times change right? Nobody would have expected that from me when I tell them as I’m quite girly now. But your words about me achieving what I have and saying it’s wonderful means a lot to me πŸ™‚ Thank you so much! πŸ™‚ A lot of the time I often think that I’m not doing well enough and I always forget to look back and see how far things have come and instead am always focusing on the future, so I need to make sure I do that now.

      • Steven W
        June 30, 2015 / 8:01 pm

        Inch long hair eh? Luxury! Oh, I’d love to have inch long hair now. πŸ˜‰ Family genetics have other plans for me though… lol

        Times certainly do change. When I was the age you are now I hadn’t even been online for the first time yet – and I didn’t get my first computer until I was 28!!! It’s not that I’m all that old – just that I was very late getting into it all. My parents had the internet about 3 years before I did! So for you to have started up such a successful blog and be an expert in your field in your early 20s does impress me.

        Yes, you’ve achieved so much to be proud of. πŸ™‚ It’s good to look back sometimes and see how far you’ve come. A couple of entries ago I noted you that I’d take a look at your earliest blog entries sometime. Well, I’ve not done that yet but I’m certainly going to. πŸ™‚

        • June 30, 2015 / 10:19 pm

          Ha ha, yeah, compared to my hair now it’s a bit of a shock!

          Thank you though πŸ™‚ It’s really so kind of you. Don’t be too scared by my old photos though, ha ha!

  4. June 30, 2015 / 11:02 pm

    you are an inspiration to me….you are so strong

  5. June 30, 2015 / 11:38 pm

    Hello, my gorgeous friend! This is such a beautiful and honest post, thank you for sharing. Like you I have an illness too. Fatigue is also one of the systems. I haven’t written about it yet but perhaps you just inspired me to do so, thank you!!!
    Sending you much love & hope all is well!
    God bless.
    xoxo, Vanessa
    http://www.WhatWouldVWear.net

    • June 30, 2015 / 11:41 pm

      Hi Vanessa! Thank you so much! I’m sorry you are going through illness too, it’s amazing just how many people are but nobody knows about it. I hope it might have inspired you!

  6. ali
    June 30, 2015 / 11:40 pm

    Wow Lorna, what an inspiration you are to anyone with this illness, that must of took a lot to share that here on your blog having lived so privately with it for so many years. Your blog is amazing, keep up the good work xxx

    • June 30, 2015 / 11:42 pm

      Thank you so much ali, I’m really glad you think so. I’m glad you like my blog so much!

  7. Michael
    June 30, 2015 / 11:54 pm

    Well done, Lorna!
    I think that when “rare” or “little known” ailments are made public by people who, like you, can reach a wide audience, the message gets through with more impetus.
    I have a four year-old son with some of the symptoms you describe. He has Fragile-X syndrome -a genetic disorder- which means that part of his brain develops at a slower speed than the rest. He is also hypersensitive to smells, sounds and has photophobia, so I understand some of the things you describe.
    Please carry on letting us know more since the more we know the less we’ll have to discover.

    • July 1, 2015 / 12:47 am

      Thank you Michael, I’m really glad you liked this post and it was helpful. I’m sorry to hear about your son and the problems he faces too, it’s definitely unfair sometimes, but I’m sure with the love and support you give him, that will make a huge amount of difference. I’m definitely going to continue with the posts and have a series on it, I’m not sure how often I will be able to make these though as they do take a long time to write, but I’m trying to aim for at least 1 a month! We will see!

  8. July 1, 2015 / 12:52 am

    Lorna, I know what it must of taken for you to write this and I’m so pleased you have. Bringing awareness to M.E is so important and you’ve managed to do this with such grace. M.E can feel like an incredibly lonely illness but when I read this, it’s like I’m reading about myself and its a good reminder that we aren’t alone. My M.E was also triggered by glandular fever and the glands in my neck/throat and groin are constantly raised and tender, I mention this because, this isn’t a symptom that gets mentioned as much as others, or at least on the sites and articles that I’ve read.

    Your attitude towards M.E is admirable in every way and I hope that it gives hope to other M.E suffers whilst educating and enlightening those who either know nothing about the illness or know of someone with M.E.

    Take care lovely and I truly hope we can meet one day πŸ™‚
    Daniella xox

    • July 1, 2015 / 1:03 am

      Hi Daniella, thank you so much! I’m truly glad that this post was inspirational to you and that you were able to relate to it too. This is what I was hoping to achieve when I decided to make it public. I truly want people to understand about M.E and learn as well as those who have it to not feel alone. It definitely can feel lonely, especially when people you meet don’t understand, so I totally get that.

      Having the glands raised isn’t something that is mentioned much, you are right. I don’t think many people do mention it at all actually, but it’s very common for me and a permanent fixture. I can always feel my one gland like a pea lump on my left side of my neck.

      I’m really happy that you don’t let yours get you down either though, your blog is amazing and it just goes to show that we can achieve what we want to and we don’t have to give up on life because of the problems we face πŸ™‚

  9. July 1, 2015 / 2:16 am

    Thank you for sharing Lorna! You are very brave and strong, and now I admire you even more. God bless you

    • July 1, 2015 / 2:19 am

      Thank you so much!

    • July 1, 2015 / 10:32 am

      Thank you Rakel!

  10. July 1, 2015 / 10:14 am

    Hi, thank you for writing a very detailed account of your ME it helps me and other sufferers when we realise we are not alone, I wish you every success.
    John
    https://mecfsjourney.wordpress.com

    • July 1, 2015 / 10:23 am

      Thank you John! I hope it does help, we are definitely not alone!

    • July 1, 2015 / 11:28 am

      Thank you very much Bry, that means a lot to me!

  11. July 1, 2015 / 2:39 pm

    Thank you for sharing this personal struggle. I hope that others with M.E. find you because you are such an inspiration. I learned something today and hope I can share with others if I see what you described. Have a great day!

    http://www.kathrineeldridge.com

    • July 1, 2015 / 2:56 pm

      Thank you so much!

    • July 1, 2015 / 4:14 pm

      Thank you Paola!

  12. m,m
    July 1, 2015 / 6:21 pm

    Beautiful photos and I love love love your style of writing! Keep it up!

    MΓ΄j BLOG /KLIK/

    PS: Follow for follow? Via GFC, I always follow back !

    • July 1, 2015 / 6:31 pm

      It might be better for you if you actually read the blog post instead of just coming here solely to ask me to follow you πŸ™ Hopefully you do read it and gain some knowledge from it πŸ™‚

  13. July 1, 2015 / 8:34 pm

    Hey Lorna! Before this I never knew what M.E is.. its so nice of you to accept and express what you have been going through since so many years. It takes a lot of courage to let others know about that other side of yours. I wish you happy health for future! πŸ™‚

    • July 1, 2015 / 8:58 pm

      Thank you so much πŸ™‚ That’s really kind of you.

    • July 1, 2015 / 8:59 pm

      Again, please do try to read the article. It’s not about my style. Thanks.

  14. Mandy
    July 1, 2015 / 8:54 pm

    Reading this was like looking in a mirror. Thank you so much for writing it. X

    • July 1, 2015 / 8:59 pm

      You are welcome! I hope that some of my other posts will be helpful to you too in the weeks to come!

  15. July 1, 2015 / 10:02 pm

    Wow πŸ™‚ thank you so much for sharing your problem with us! I admire you.. I’m too anxious to do something like that. You are a very strong woman ! xx

    http://www.aishettina.blogspot.it

    • July 2, 2015 / 12:01 am

      Thank you πŸ™‚ You should definitely be proud of who you are, anyone who judges isn’t worth your time. Stay strong!

  16. July 1, 2015 / 11:53 pm

    Sorry to read about this but in the same time glad to be part of that comunity you were talking about in your post,
    I really believe that sharing is a kind of relief when it comes to sad things
    wish you all the best
    http://www.theitalianglam.com/

    • July 2, 2015 / 12:02 am

      Thank you so much, I completely agree with you. Sharing really lifts a weight off your chest as you no longer need to keep things hidden. Thank you for your support.

  17. July 2, 2015 / 6:54 am

    Wow I love that you opened up and shared such a personal story. You definitely brought awareness about M.E since I am just learning about it through you. You are such a strong person and an inspiration to everyone!

    Tina
    http://www.justatinabit.com

    • July 2, 2015 / 10:47 am

      Thank you so much Tina!

  18. July 2, 2015 / 7:18 am

    Lorna, this is incredibly brave of you and a testament to your strength. β™‘

    I remember when I first started following you and it was all about the clothes. I have to say I like hearing more about your life and how real you are… I know this will help many more people xox β™‘

    • July 2, 2015 / 10:48 am

      Thank you Launna, that means a lot to me! It’s definitely more than just clothes!

    • July 2, 2015 / 10:48 am

      It definitely can be, it can be awful.

  19. July 2, 2015 / 11:27 am

    Wow! You are surely a brave girl! I respect people who beat their shortcomes and find a way to succeed. I get it is tough to cope and you will take time! Even my husband has this genetic disorder where 50% of the cells in his eyes are non-functional. So in reality he only can see 50% of what we can see and yet he is a biker and an International professional Inline skater ! It is stories like yours and others that inspires me to give a little more effort everyday towards my dream πŸ™‚ All the best Lorna.

    New Post – Style..A Pastiche!
    Facebook

    • July 2, 2015 / 11:32 am

      Thank you so much Chaicy πŸ™‚ Your husband sounds amazing and inspirational if he’s managed to achieve all of that with limited sight. I know stories of people in a wheelchair and they don’t let it stop them doing sports and having fun like nothing is wrong. I think it’s all down to how you handle things mentally and that’s the most important thing! Your support and kind words mean a lot to me.

  20. July 2, 2015 / 3:37 pm

    Wow. I too am an English long-term ME-suffering (ex) fashion blogger, turning 27 in a few weeks!!
    I had to stop blogging a year ago, when I suffered a dramatic worsening in symptoms, and have been bed-bound ever since. But I have big hopes (aka desperation!) that I won’t be in this state forever. It’s lovely and inspiring that you felt comfortable in sharing your story. You’ve created a wonderful blog despite everything.
    Best wishes x

    • July 2, 2015 / 3:41 pm

      Hi Laura,
      I’m so sorry you are suffering a relapse, that’s horrible. I understand fully how it is to be feeling ok and then for no reason, you start relapsing again and going backwards. Sorry you are going through it again. Stay strong though, I truly believe your mind can help you through it and things can get better. I’ve found with me that as long as I stick to eating really healthy with lots of vegetables and fruit, drinking lots of water, getting enough sleep and staying positive, it helps a tremendous amount. Please do keep in touch!

  21. September 19, 2015 / 1:03 pm

    This is an AWESOME post! I have been going to a number of specialists for a lot of these same symptoms. I am going to speak with my physician about ME. Thank you for sharing your story!

    • September 19, 2015 / 9:16 pm

      You are welcome! I hope it helps you and you get to the bottom of things.

Thanks for your comments =) I read & reply every one =)