A Very Hard Post To Have To Write

I never wanted to write this post, in fact when I started blogging I never intended to have my photo’s in it or write about my life. It was to be an anonymous blog of sorts, of course most bloggers will realise that to write a blog does include you, it has to otherwise it seems vacant. Anyway as you all know the blog is very much an extension of me and my personality so it seems odd to try and hide part of that, but there are things I like to keep private. When one of the private things started to impact upon the fashion however it got a bit tricky, and I have found it hard to write a lot of the posts from the last 3 months.
So I am going to explain a few things in this post to get it out of the way, like ripping of a plaster (band-aid for my USA’ers). I have rheumatoid arthritis (RA).
It is an incurable disease which causes inflammation of the joints. Yes, it does majorly occur in older people but there is a large percentage of younger people with it. There are many different strains of arthritis and it effects people in different ways. I have a fairly bad case, it differs day to day but every day is affected in some way. From slightly achy hands on a good day to complete exhaustion (no being able to get out of bed), extreme pain in my hands (so I cannot even move a finger), same pain in my knees, feet, spine, elbows, wrists, ribs. My hands are always cold, I can spend a whole day or week feeling nauseous. I can’t tell you the last time I managed to sleep right through the night. It is hard to sleep with your hands, and sometimes your elbow perfectly straight – try it when your laying in bed just for a minute, it is pretty much impossible.
You know your having a bad day when your laying in bed, one eye open, trying to think of ways to hide your hair so you don’t have to go through the trauma of having a shower – it involves moving your hands and arms more than you would think! Then it is even harder to consign yourself to the fact that if you aren’t well enough to have a shower you really shouldn’t be leaving the house. Some days I think are a good day can quickly turn into a bad day, walking half way to the shop and have to come back because your already exhausted, having to go and hide in a changing room so you can have a rest – Harvey Nichols is best you could drop dead in there and nobody would notice.
I don’t like to tell people about this because I don’t want any sympathy, there are people a lot worse off than me.
Whilst waiting for X-rays in an empty room with your phone and a mirror, bloggers take a photo. I had to laugh at myself for doing this without even thinking. I think the gown could be Prada SS11.
So how is this affecting the blog?
  • Sometimes I don’t have the energy to get dressed, so unless you want to see my range of PJ’s there aren’t as many outfit posts.
  • Some days I can’t bare to put proper shoes on my feet hurt so much, again unless you want to see my Ugg boots a lot, not great outfits posts.
  • I hate wearing flats, but just looking at a pair of my beloved sky-scrapers and how my knees feel somedays, can make me cry.
  • I have put on weight, not that much but going from an 8/10 to a 12 is enough to make sure half my clothes are too tight, thus limiting the outfit selection – taking so many tables makes me feel either totally nauseous so I can’t eat, or insanely hungry so I eat tubs of hummus and wheat free crackers – more calories than you would think, especially when you are in too much pain to exercise.
  • I haven’t been able to wear any rings for a while due to swollen fingers.
  • I can’t wear nail polish as my nails need to be assed – one strain of arthritis can affect the nails.
  • When your in pain it makes you snappy, sometimes I have to leave a post a day or so until I can rewrite it without sounding like a serial killer.
  • My hands can hurt so much I can’t type, hence drop in my replying to emails and visiting your blogs.

I took this photo trying to devise a way to do more outfit post without going outside. Of course for walking the dog etc I wear this kind of thing all the time, I never expected to wear it to go out for lunch but it was either Uggs and be able to walk or don’t go at all. Luckily in Manchester Uggs and trackies are actually considered trendy by most of our youth, all I needed to do was swap the Chanel for a Pauls Boutique or LV Speedy bag and I would be set!


I also had to ditch my beloved Miu Miu bag as I just can’t carry it anymore, shoulder bags only from now on – I did get the Pierre Hardy to make up for it though.

  • I also have to wear special gloves which make me look like a hobo, sometime I layer over them with other gloves, sometimes I forget to take them off for outfit posts like the pic over on Wendy B’s blog.

Anyway that is about that, I have lost a few followers as I know I get more hits for outfit posts but I think that I am writing some interesting post in exchange. I wasn’t sure if to put this post up but there are lots of great blogs by RA suffers which have helped me it is nice to know your not alone. I was also inspired after readings Vix’s post on her hip operation, and the lovely Mrs Fab, thank you ladies.
Pearl

51 thoughts on “A Very Hard Post To Have To Write

  1. Your blog in the end is what you are about. And by sharing this with all of us, you have got closer to your readers.
    Talking for myself, I feel so very proud of you.
    Not everything in life can be Prada…What you have shared is move valuable to me than a GALLIANO dress. You know what I mean my dear pearl.
    Mil besos siempre.

  2. i admire your courage for speaking up about this, i think it is good for your readers to get an understanding. and there are many more interesting things to a blog than just outfit posts, so keep up the good work 🙂

  3. And I thought I had it bad with my dodgy knee and RSI in my hands – oh Pearl my heart goes out to you and its amazing you've blogged so consistently under such conditions. Give me a blog like yours with interesting written content over one that posts outfit shot after outfit shot with nothing to say any day.

  4. Pearl, I have the utmost respect for you – and I am so impressed by your bravery in writing this post, and choosing to share your daily experiences with your readers. It is true that once you've started a blog, it's impossible to keep yourself and your real experiences out of it.
    I know that you said you don't want sympathy,but I am really sorry to hear that you have (and will continue to have) Rheumatoid arthritis. I don't know much about the condition (apart from a friend who had a junior version when we were younger), but I can really empathise with the frustration felt by a medical condition that affects your day to day life.
    Under the circumstances, I am incredibly impressed by your perseverance with posting! I also found that in the months leading up to my surgery, I found it hard to reply to all my comments and emails, as for me it hurt my back to sit typing. Oh & I really do sympathise both with the issues of heels, and heavy bags! (I'm still not allowed to carry more than three kilos, and all my bags have long straps to be worn over the body).
    I really do wish you all the best with moving from moment to moment with this. I'll never forget your kindness when I was in hospital – the charm bracelet and black trousers have become steadfasts in my wardrobe.
    Roz

    Ps – This may not be at all relevant to your condition, however I can only say from my own personal experience with pain, is that the Alexander Technique has been my saving grace.

  5. I know you said you do not want sympathy … but you have mine a really lovely girl that I have known all her life suffers terribly with this and is under going clinical trials I will see if I can find out the info and mail it to you xx

  6. Pearl i am so moved by your post. You are a style inspiration to me and I am sure many others. Thankyou for helping us to understand and know a little more about the things you are facing.

  7. So sorry to hear you are suffering, I know you dont want my sympathy but anytime I have suffered from anything that is physically restricting it makes me thankful that I generally in good nick physically. My Mom has arthritis so have an idea of how restricting and painful it is.

  8. Pearl that was so beautifully written. It must have taken a lot of courage to be so open. Thank you. I've followed you since April and have no intention of stopping. I much prefer the 'interesting' posts… the fibre analysis one was actually my favourite so far! Please be kind to yourself in every way.
    The bestest of best wishes
    Kathryn x

  9. What a diamond you are. This post will go so far in making people aware of the condition and its severity. I have older relatives with this, but had no idea just how bad it can be. Hugs to you and I take my hat off to your bravery xxxx

  10. Hello Pearl, I would like to wish you a lot of strength and courage to cope with your disease. My mother is diagnosed with chronic fatigue syndrome and fibromyalgia, and she has symptoms similar to yours, so I can relate to what you're saying. Don't give up, keep on posting on your lovely blog, I always enjoy reading it!
    Have a nice sunday, and I'm looking forward to reading your next post!

    xx Viola

  11. Pearl, you are very brave to write this post and share this with us. You are clearly a great person to deal with this condition and be in such good spirits and write such engaging – and vital – fashion posts all the while.
    Take care xxxxx

  12. Dear Pearl
    I don't quite know what to say except I send you my best wishes and please don't think that your outfit posts are the only reason to visit your blog.

    Mo x

  13. Your bravery in writing this post makes you all the more admirable Pearl. Also I can assure you that as one of the "youths of Manchester" I don't perceive uggs and trackies as being particularly trendy, but you should wear them and not care about what anyone else thinks. Sending you lots of good wishes,

    Alexandra Th├®r├¿se xx

    http://www.alexandratherese.com

  14. Pearl, thank you for sharing, it makes it easier to understand and connect with you. Although I can also understand the need to keep some things private. I am sorry that the condition is causing so much suffering for you.

    For me the whole point of reading fashion blogs is that they are about real people. How we dress is affected by so many different things including the challenges that we face in life, this is partly what makes them so inspiring. I love all of your posts, outfits and the really interesting topics that you explore.

  15. Thank you for writing this. I'll still be reading your blog and I'm sure you'll build an ever growing loyal base of followers no matter what.
    Wishing you all the very best!
    CC x

  16. You've written so bravely adn eloquently – thank you for this. It makes your achievements seem all the more remarkable – this blog, your PhD – thank you for sharing this. Like most people, I look at your posts for your amusing writing and obvious intellegence as much as your outfits. Much love and good wishes, xxx

  17. How brave of you to share this with us, you have shown the most amazing spirit. Keep on the fight, you faithful readers will stay tunned.

    If your style has to develop in other directions to keep you in better health, we also want to know. Heels & nailpolish help create an attitude, and you already have plenty of that, the other things are just props

    xoxo from Argentina

  18. Oh, Pearl, bless you. I'm even more amazed that you manage to post every day – you're an absolute marvel. Your outfits posts are always great, but it's your personality that shines through and makes your blog so fun to read. Hope it gets a bit easier for you – and I for one love the hobo gloves. 😉 xxxx

  19. Totally inspirational post, and I am totally in awe that you post pretty much daily knowing this about you.
    As a lifelong size 10/12 person, a few years ago I started to take medication that has meant I am now a size 18/20. Most of my beloved Westwood clothes are in storage and I sometimes dispair about ever fitting in them again. I ditched a lot of my fav. blogs, because they made me feel inadequate and frumpy. However, I also recently discovered your blog and I love it. Your posts always seem so positive and inclusive to all, and to echo another reader, it's not just your posts about clothes that keep me coming back.
    I really hope that things get better for you, and long may you continue blogging. xxx

  20. I actually prefer blog posts with a bit of 'meat' to them. I've been really enjoying your recent posts about branding, and such-like. Don't get me wrong, I love a good outfit post, but for me, a great blog has both. So there's no reason that the quality of your blog has to dip. I'll still be here reading, whether you're putting up outfit posts everyday, or making me think about the way I shop.
    My step-nan has RA, and like you, she has great trouble sleeping very much. But you'd never know it unless she told you; she's always glamorous and has a smile on. She's so brave.

    I don't know if luck is the right thing to wish you. Luck and strength, I suppose, to overcome discomfort and pain.

  21. Oh Pearl. Chronic disease and chronic pain is the worst. But, you keep popping up in my reader with interesting outfits on and interesting things to say, despite it. So you must be really tough. I'll never judge you for wearing comfy shoes, either. I've had to all year because of my foot.

    I loved your post about Egypt the other day.

  22. It's so brave of you to have written this post,
    and it really makes me admire you all the more.
    Sending much love your way x

  23. I've got no problem with pyjamas or uggs.. actually I think it'd enrich the 'clothes are personal' aspect of your blog here. If your arthritis means you have to dress a certain way, showing that (and even telling us how annoying or upsetting it is, which shoes you'd rather be wearing, etc).. it'd be very personal and you may not be into revealing so much of yourself – which I would totally understand. But it would put a lot of human character into the vague idea a lot of people have of "having arthritis", and it would let you, I don't know, maybe "get the better of" the condition, maybe?

    Seeing people incorporate things they have to wear into what they WANT to wear is a very thought-provoking part of reading fashion commentary.

    Big respect for sharing this, either way.

  24. Utmost respect for you posting this- at the end of the day your fabulous blog is just a blog and you, your wellbeing and happiness, should take precident.

    Your blog spread fashion joy… keep that blog joy going but of course, keep yourself looked after!

  25. I'm glad you weren't afraid to post about this. I'm sure you are helping someone..somewhere. So sorry about that beloved bag.

    Wishing you good days ahead. Everyday. Somehow.

  26. Darling Pearl
    People who have their health dont always know how lucky they are. For me , I would give up all my lovely things in exchange for good health. I too have a chronic medical condition which I mangage to control but I dont know what the future will hold for me. If only we could save up our pennies for buying a new auto immune system instead of scarves and bags!! If you have your health you have so much to be grateful for. Love and hugs gorgeous.

  27. Oh Pearl, you poor dear. There are always people worse off than ourselves, but that doesn't mean we can't give our friends sympathy when they are having tough times. It makes me feel awful when my friends are unhappy but are too worried about 'burdening' others to share it, and that goes for blog friends too. I'm really glad you have let us know about this; it isn't looking for sympathy, it is being honest about your life and must have been very hard to write about, so respect.

    We all have so many parts of our lives that don't always make it onto our blogs. I've never talked about depression for instance, though only because things have been smooth enough lately that I don't feel the need to. I hope that having sad something this will make you feel more able to tell us when you are having a grumpy day rather than feeling you have to hold off. We dont mind a rant now and then! And I would love to read about the adventures of Pearl trying to find sexy flat shoes 😉 Seriously, if it is this bad you need some fabulous flats for days when you can't face the heels. Loafers and satchels and gloves, nothing wrong with any of those fine things 🙂 Big hug my dear xx

  28. I'm so glad you've been brave enough to post this, Pearl. Arthritis is a dreadfully dehabiliting and limiting illness and I have nothing but admiration for the way you are always so positive, stylish and beautiful despite being in awful pain.
    I don't just visit for your outfit posts, you write in a bewitchingly open and honest manner which never fails to captivate.
    Let's hope that research and continued medical advancements mean that in our lifetime the experts can come up with a cure.
    In the meantime stay positive. What doesn't kill us can only make us stronger. My "disability" makes me the tough old bird I am. I'd have prefered to have been born with proper joints but walking with a limp and being a bit grouchy with pain makes me "me". xxxxxxxxxx
    PS Have you been to a podiatrist? Although it wasn't cheap, my gait was assessed and I had insoles custom made which made wearing heels a little easier.

  29. I'm very sorry that you have to deal with such a horrid illness Pearl – but I'm glad that both you and Vix have spoken – it means a lot to people (yup, I'm one of those) who have their own illness issues too. It is great when people speak out – coping with crap can feel so overwhelming and frustrating – let's give all of our ailments a good airing and bashing, together!

    (Drop-kicks PVFS over the garden wall – I wish – lol)

  30. Excellent post,well written and refreshingly honest.RA must be a nightmare,and there are many of you out there just trying to live your lives,and I get the strong impression you generally just get on with it.Good on you for coming out with it-fecking brave,and great to show that you may have a disability but you're not dead!
    You write a great blog,and who wnats the same stuff everyday?Not me! Varied posts,with plenty of personality is fine by me!
    🙂

  31. It takes courage to share your personal details with strangers. I can't imagine what you are going through but I can tell you are a strong person and I know you will succeed in all the tasks that life gives you. Your blog is great and will continue to be so

  32. Pearl, so glad you shared this. It isn't something I ever expected from blogging but being exposed to the truths in people's lives that don't fit the cookie cutter 'fashionista' image is so honestly perfect. I so admire you for having the courage to reveal this part of yourself on the blog.

    I'm so sorry to hear about how difficult it can be. I can't even imagine experiencing that sort of pain – especially on a daily basis. Personally, I love the variety of your posts. Outfit posts, rants, witty fashion reviews/thoughts… I'm happy to read any sort of post you feel in the mood to share.

    p.s. just realized I never sent you that cashmere comb. will get it in the post tomorrow. xx

  33. Pearl, you were one of the first blogs I followed and I've enjoyed reading your posts ever since on whatever subject you choose to write about. You've visited my blog and left such lovely comments. I wishing that more good health days come your way so you can wear your beloved Louboutins. You are inspiring! xx

  34. I agree that sometimes people can reveal too much in a blog that nothing is kept private but talking about something like this does help and gives people who follow you and enjoy reading your posts more insight to who you are and gives us more admiration.
    My mum has this disease and it has made me think a lot about what she is going through and how hard it is to do everyday chores. I think you have inspired me to make more of an effort when I am home to take care of her and give her a rest from stuff she doesn't need to do when she has so much going on already.
    Fingers crossed they make some developments in the healing process as I know there really isn't anything out there to help cure or relieve symptoms of the disease.
    Kate .x.

  35. Pearl, I am so glad that you decided to open up and share this bit of private information with us. I had no idea you had arthritis. I am simply in awe of how strong you are in this circumstance as I would definitely not be. In the future, if you ever decide to share more about how your life outside of the fashion world is going, please by all means do so. So sorry to hear about the Miu Miu bag. Hang in there, miss. 🙂

  36. Mad love regardless Pearl! And at the end of the day I think if you lose them they probably weren't worth having in the first place.
    Keep up the amazing work, and hopefully today is a great day for you.
    Love C
    P.S. Thanks for following me 😀

  37. I know it was a difficult post to do, and that makes it ALL the more impressive for having done so. I know it's hard to put it out there, but in the long run, you are connecting to people who connect to you, and this is part of your life.
    Funny how those outfit posts get more interaction, eh? I spend so much time working on a great text post, but it's the outfit pictures that generate the loudest responses, go figure.

    I know Turmeric, and Mangosteen have anti-inflammatory properties, they are natural herb and a fruit supplement, maybe you could research them and see if one would help you.

    Sigh. You've really made a bigger impact on me than you could know with this post. Bless you.
    -Bella Q
    the Citizen Rosebud

  38. Pearl darling I didn't know and so glad you told us all!! Why suffer on your own when we can all sent you virtual hugs and be on your team!

    much love xx

    PS I've been v busy hence only just catching yp (soz) and that gown is so Prada 2011

  39. I just found your blog recently while doing some research on Mawi jewelery. Thanks for sharing this, it makes me appreciate your blog and love for fashion even more. No pity here, just solid respect.

    Bisous x

  40. Hi Pearl, hugs from Hong Kong! I really respect and admire your courage to write this post! My mom and 2 other relatives also have arthritis so I totally understand what you mean. Whether or not you're writing about your outfit, fashion, daily life or whatever, I still like your blog! Hang in there! 😀

    Cheers,
    Mia

  41. Pearl, this post was fascinating and so moving. My Mum suffers with it, mainly just in her hands for now, and I know how bad it can be for her so it must be horrendous for you. I suppose I've never thought about the effects it has on everyday life for someone your age so this was a real eyeopener.

    Please don't ever feel like you need to apologize for your posting frequency/type etc. I know I'm a new follower but this is one of the most interesting blogs I read and I'd far rather have the occasional post from you than daily posts from someone with nothing interesting to say!

  42. Oh, my dear! I remember you telling on the blog once or twice that you went to a hospital but I'd never imagine that the problem is so severe! Thank you for sharing! I even can't imagine what you're going through! My problems seem so small in comparison. You're so brave! Be strong! Keep doing what you're doing! Love yourself!

  43. People don't appreciate how exhausting chronic conditions are…I'm amazed you do as much as you do (and look great doing it, even in Uggs)!

  44. Dear Pearl,

    Your are a brave young woman to be so honest about your condition. I do wish you the best and hope that you can have some relief soon. Your blog is inspirational and I hope you continue to write about whatever you fancy. I will be waiting to read. Hugs and Kisses.

  45. No sympathy, just a wee message to express my thoughts on how brave it was for you to reveal your condition, to laugh at your comments on re-writing so as not to sound like a serial killer and to identify with starting a blog a bit anonymously – it just doesn't happen like that does it? All the best to you love x

  46. People have no idea what others are going through as we always try to hide it! It must have been hard writing this and to share something private! I have health problems although no physical symptoms but I don't think I'm brave enough to share with world lol! We just have to keep going best we can! Blogging is a great distraction I find! x

  47. I'm just catching up on blogs and wanted to say how amazing I thought this post was. And you're amazing too. I can't even imagine what you have to go through.

    My mum has Osteoarthritis and, judging by how poorly my joints are holding up at the age of 31, I'm sure I will end up with it too. But to go through this at your age is such a challenge, and you are an inspiration.

    xx

  48. Style and grace come from the inside and are only accented by what you put on your body or feet. You are pure elegance and class and you demonstrated that by how you have handled a challenging situation that might have made others crumble. You have earned the respect of your readers, not just for your fashion sense, but for being you! Thank you!

  49. Pingback: Crying Dry Tears: Another Very Hard Post To Have To Write | Fashion Pearls of Wisdom

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