Eat, Sleep, Netflix, Repeat! // Spoonie Update!

Hey guys

Just popping in to say hi!  I have loads of posts I want to get to you at the moment (my new Glossybox review and my Prairie Charms Christmas box unboxing) but unfortunately my chronic illnesses are not cooperating… you know “Computer says no *cough*”?  Yeah well this is “body says no”!

I’ve had two days this week where I just haven’t been able to keep my eyes open.  It’s normal for me to be in bed most of the time, and I do sleep a lot, but not usually all through the day.  I think my body is still trying to recover from the Christmas period.  I didn’t do anything even slightly strenuous but just a change of scenery and sitting at the table for meals has taken its toll.  I know a lot of other spoonies are having a very similar experience at the moment.

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The only bright side to this is that at least my pain hasn’t been too bad this week.  I’ve just been trying to make sure I eat and the basics, and everything else has been a bit on hold.  I had a home visit from my ME Clinic yesterday which was really useful and insightful, although 1.5 hours of non-stop talking and listening was really tiring.  I felt like it was worthwhile though – although they can’t ‘cure’ me, they have given me a lot of insight into what precipitated me getting ill.  If anyone wants to know more about how ME Clinic home visits work, let me know and I’ll write something up.

Anyway, I’ll keep this short as I’ve got more sleeping to do (well, it’s not going to do itself!) Haha!

Hope you’re all well and have a great weekend.

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2015 in Review // My First Year of Blogging!

Hey guys!

I hope you’re reading this somewhere warm, inside and away from the horrible UK wind and rain!

The WordPress.com stats helpers prepared a 2015 annual report for my blog, which I’ve just read. It’s exciting to see such a big overview of what I’ve done this year!

Here’s an excerpt:

The concert hall at the Sydney Opera House holds 2,700 people. This blog was viewed about 18,000 times in 2015. If it were a concert at Sydney Opera House, it would take about 7 sold-out performances for that many people to see it.

Click here to see the complete report.

I want to thank everyone who has read my blog this year, or taken the time to support me. Five special ladies stand out, for their regular and supportive comments, keeping me going when it seems that I’m just writing to myself lol!  They are:

A fellow ME warrior and all round lovely person, Rhiannon at Thoughtful Pigeon: https://thoughtfulpigeon.wordpress.com/

Another spoonie warrior and survivor, Rhosyn at Rhosyndmd:  https://rhosynmd.wordpress.com/

Lola at Lola Rocks, who is a lover of all things nail posts and nail art!  https://lolanailsandbeauty.wordpress.com/

Another fellow chronic illness warrior, crafter and cat lover, Moongazer:  https://oldmamoon.wordpress.com/

Shal at Mrs Dimples Beauty (who I also have the pleasure of being in a Facebook beauty group with!):  https://mrsdimplesbeauty.wordpress.com/

Check out their blogs and say hi!

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Thanks for a great first year (well, 9-10 months) of blogging!

Lots of love,

Katie xxx

The Frustrations of Living With an Invisible Illness/Disability.

I don’t talk much in detail on this blog about my illnesses and the everyday challenges they bring.  When I first started the blog, my intentions were to talk a lot about my M.E. and fibro, but as it went on, I found myself blogging almost solely about makeup and beauty as that’s where my passions lie!  However I have realised it’s important to talk about the reality of my day to day life.  I need to use this platform to raise awareness of invisible chronic illnesses, so that more people understand.

My life has changed completely since first being diagnosed over two years ago.  However it is only really since December 2014 that I have been mostly bedbound.  M.E. is a fluctuating condition, meaning I have good days and bad days (or should I say bad days and not-as-bad days?  There are no real ‘good’ days!)  I sometimes make it out of the house, for my numerous doctors and hospital appointments and the very odd social occasion, however I would say I spend around 70% of my life bedbound, 10% housebound and only the remaining 20% able to leave the house.  When I do leave the house, it has often taken days of rest and preparation to manage it, and almost always involves several days of recovery in bed afterwards, with increased pain and fatigue.

It’s only really in the past 9 months that I have truly felt ‘disabled’.  M.E. is classed as a disability, but can have different levels of severity.  Some people have mild M.E.  They may even be able to work full-time and maintain a social life, but with much more rest than the average person.  On the opposite end of the range, some people are totally bedbound, use wheelchairs, are incontinent, and even have to be tube-fed.  Bearing this in mind, even though I have been very ill, I still count myself lucky to have a certain level of independence most of the time.

A few things have happened in the past few months to make me realise that I am much less ‘able’ than I used to be.  I can no longer walk even short distances, and have to rely on taxis to take me on short journeys… meaning I then have to endure the (probably ‘well-meaning’) comments from taxi drivers on the short distance I am travelling.  I am not in a wheelchair and as far as they can see, I look ‘healthy’ – they don’t understand why I don’t just walk.  Often, the implication is that I must be lazy.

I can no longer stand for more than a few minutes at a time.  When healthy, you don’t even realise how much time you spend just standing.  At bars, in queues, waiting for prescriptions.  I now have a great knowledge of where the nearest chair or bench is!  On the very odd occasion I manage to attend a social event, I have to find out where it is so I can arrange a taxi to drop me as close as possible.  I have to ask the person planning it whether we are staying in one place, as it is difficult for me to walk between bars etc.  I have to find out whether there will be seating available, as I cannot stand chatting for hours on end.  I have to find out whether there are stairs, whether they have a lift and where the nearest toilet is.  Of course there are often disabled toilets on ground floor level, but as I am not in a wheelchair or ‘visibly disabled’, I am made to feel very uncomfortable using these facilities.

The thing that prompted tonight’s post is what happened last night.  My husband was kind enough to buy me tickets to see Fall Out Boy for my 30th birthday back in May.  We both hoped I would be feeling a bit better by then (I never really anticipated feeling this bad for so long).  Last night came around and I was feeling dreadful, but really didn’t want to waste the expensive tickets and the rare chance to see an American band here in Leeds.  I pushed through and managed to get ready, with a lot of resting in between.

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(And this photo is why I love makeup so much – it disguises all sorts of pain and illness!)

My father in law kindly dropped us off in the car, saving any walking.  Thankfully, Leeds Arena have escalators going up to the third block we were in,  However once we got into the actual seating area, we realised we were the very back row, right at the top of the arena!  I tackled the stairs with some rest breaks, but felt really weak and bad once at the top.  We couldn’t see any free seats and realised someone must be in our seats, but you can’t see the seat numbers when people are sitting down, so I waited at the top whilst my husband went to get the steward.  The steward managed to clear our seats but said they were at the other side of the row and we should go all the way back down the stairs and back up again on the other side.  I explained to her that I wouldn’t be able to do that, and she kindly found us an easier way to squeeze around the back and find our seats.

Now I know to a normal person that doesn’t sound like much of an ordeal, but I was exhausted and shaking by this point.  Once in my seat, I had a drink and recovered a bit – I was looking forward to the show.  The music started up, the band came out onto the stage… and EVERY SINGLE PERSON in the seated area stood up!  I couldn’t see anything but people’s backs.  I thought they might just be standing at the beginning, but everyone continued to stand for the ENTIRE show.  At this point I just felt so completely defeated.  It had taken everything I had to get there, and I couldn’t see a thing.

It sounds dramatic, but at that point I just burst into tears, and sobbed an embarrassing amount into my husband’s shoulder!  It wasn’t really just the fact that I couldn’t see the stage at all… it was more the total realisation that I was ‘disabled’… ‘less able’… ‘differently abled’…. whatever you want to call it!  In the past, I would have been able to just stand for the whole show, no problem.  These days I wouldn’t be able to stand for an entire song.  However because I’m not visibly disabled, I don’t feel that I can ask people to make concessions.  Maybe if I had been in a wheelchair (and don’t get me wrong, I am very grateful that I am not), I would have felt I could ask the people directly in front to sit down so I could see.  But as people can’t tell what is wrong with me by looking, I feel like they would be hostile and judge me, thinking I was just lazy or a bit of a princess!

My husband kindly swapped places with me so I could see through a gap, and I really enjoyed the rest of the show.  I was really grateful to have been able to make it at all, but it was quite a disheartening experience.  I think probably what I would like to get across here is this:  just bear in mind that although someone looks ‘able’, they may be suffering from any amount of invisible illnesses that really affect their abilities; M.E., fibromyalgia, arthritis, Behcets, POTS, MS and so many more.  I would love venues to place just as much importance on their disabled customers as their bodily-able ones – maybe designating part of the seated area to people who genuinely have to sit, so that they can still see and enjoy shows.

Anyway, if you’ve made it to the end of this post then high-five!  I just wanted to write something honest about my everyday life, difficulties and experiences, with the hope that it helps others understand a bit more about chronic and invisible illnesses/disabilities.

Thanks for reading!

I’m Back in the Land of Wi-fi! Chatty Catch Up and Travelling with Chronic Illnesses

Hi guys!

I’ve been away for a few days, but it was really nice to come back to so many comments on my recent blog posts!  It’s really nice to know people are reading and enjoying it, it made my day.  Shame about the 63 spam comments…. I’m sure fellow bloggers will feel me on that one!

I went to stay with my Dad at his static caravan a few hours away.  This doesn’t sound like much but it was a pretty big deal for me.  With ME and fibromyalgia, sometimes even getting out of bed is difficult, never mind making a journey and socialising!  I was very unwell the night before we were due to leave, resulting in a trip to the out-of-hours doctor.  I didn’t think we would be able to go, but after a good night’s sleep, I felt up to the journey by around lunchtime on Friday.

My husband drove, and I made sure to take my painkillers and eat and drink during the journey.  We also stopped for food half way.  I was dreading travelling, as I usually get car sick, and being stuck in one position isn’t good with fibro.  It actually went surprisingly well and I arrived in one piece!  I took my trusty electric heat pad for the aches and pains (I will never go anywhere without it in future, it’s a godsend!)  We had a really nice time.

I even got to have a 99 with strawberry sauce, in the sunshine!  It’s been a while since I’ve been to an ice-cream van.

Blog pic ice cream

Travelling and being away from home with chronic illnesses can be a bit difficult and daunting, but I’m really glad I managed it!  I’m very grateful my body held up for the weekend and journey home, and will happily take the payback that is no doubt coming (shout out to PEM lol!) as it was well worthwhile to see my Dad.

Have a great week everyone.

ME/CFS: Rituximab Could Potentially Help Us Get Better in the Future…

I was kindly sent a link to the following article by a colleague.  I am currently off sick and as you probably know, I suffer from ME (CFS) and fibromyalgia.  I am often sent articles to things that could potentially help me, which I really appreciate, but often they are things that won’t actually work (juicing etc!)  Reading this article though, it seems that there is finally some hope.  Rituximab is an anti-cancer drug, which is currently being trialled to see if it relieves symptoms of ME.

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Have a read and let me know what you think:

http://www.iflscience.com/health-and-medicine/cancer-drug-gives-new-life-chronic-fatigue-sufferers

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Have a great evening!

ME/Fibromyalgia Health Update – Things Are Looking a Little Brighter!

Hi all

Sorry it’s been a bit quiet on here this week!  I’ve had a whole bunch of medical appointments this week, so I have had to focus all my energy on attending those and then recovering afterwards.

I wasn’t really looking forward to the appointments this week, but Tuesday’s appointment with a Rheumatologist has left me feeling a little more optimistic!  I had got to the point where I was wondering if any medication/treatments could really help me at this point (I have tried a LOT of medications, therapies, suggestions etc!)  The GP had told me he’d come to the end of everything he could offer without more expert help.  After a 45 minute chat with the Rheumatologist, I left knowing that there are still things that can be tried.  He said he has seen people recover to an extent (not to pre-illness levels, but to being able to do a little more and have less crashes), and that it could still be possible for me.

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I don’t want this to come across as me saying there is a ‘cure’ or anything, as ME and fibromyalgia are currently without a cure, and we may try the suggested treatments and I could still be in the same position.  I could recover a little and then regress back to how bad I was for the first 5 months of this year.  We just don’t know – sadly, that’s the way of these chronic illnesses!  However, at least the doctor has given me a little spark of hope.  I may never recover, but if I could get back to doing some work and being able to have somewhat of a social life and more stable health, that would still be amazing.  Let me tell you, I would treasure the little things!  No more taking anything for granted, now I’ve seen how limiting bad health can be.

I will soon be trying some new medication in place of my Gabapentin (which hasn’t helped me at all, although I know it has helped others).  I will hopefully be trying some light hydrotherapy and also being referred to the long-term pain clinic.  I’ve said this many times before but I really will try almost anything if it could possibly help!  (Within reason… not the ridiculous juice cleanse ‘cures’ that circulate online!!)

I will try to get back to blogging a little more regularly soon, but I’m sure you all know and understand that my health always comes first, especially when I am trying to recover enough to return to some level of work.  Thanks for bearing with me!  Back to the usual programme of reviews and beauty soon, I hope!

Have a wonderful weekend everyone (especially those enjoying the UK sun along with me!)

ME/CFS, Fibromyalgia and TMJ: Health Update!

Hi guys

I’ve noticed that my posts about my chronic health conditions get quite a lot of viewers.  I think this could be because there aren’t that many chronic illness blogs out there, and we spoonies like to read about others with similar conditions.  There’s always the hope that someone may have tried a treatment or medication you haven’t heard of, that could help you.  Have they found a successful way to manage their condition, or do they have some hints and tips that you could benefit from?  I hope that some of my posts have been useful – I especially think anyone with TMJ/TMD could benefit from this post, as I have tried almost every treatment going (bar surgery) for my TMJ!!

I never really go into the details of my work situation on here, for obvious reasons.  At the moment, I am signed off sick, as I was too unwell to successfully complete a phased return.  The only benefit of this is that it gives me the time and space to concentrate on trying anything I possibly can to help with my conditions – including lots of rest!

My ME and fibromyalgia are always fairly life-limiting – they get in the way of me leading the busy and active life I once had.  I had a huge ‘crash’ on 24 December (yep, just in time for a Christmas spent on the sofa!!) and spent the first 4/5 months of 2015 predominantly bed-bound.  I have spent a lot of time trying to work out what triggered this crash, making my ME and fibro the worst they had ever been.  All I can think is that I did lift a few boxes at work – I know, I shouldn’t have, but it was only a couple and it needed doing that day.  I really didn’t imagine it would have such a big impact!  Maybe it was entirely unrelated and one specific thing didn’t cause the crash.  I don’t know!  I only wish I knew what caused it, as that would help me prevent it happening again in the future.

After around 4 months spent in bed, I finally started seeing some very small positive changes – I was able to spend a few hours out of bed, or wash my own hair.  Eventually, I did have a few weeks where I managed a few hours at work most days, but sadly this didn’t last.  It was all amazing progress though, considering how very unwell I was earlier in the year.

The small improvements are definitely still happening, but after 6 months, I am starting to get frustrated with the slow pace!  I repeatedly have to remind myself how bad I was, and how well I’m doing.  Yes, I may still be unable to work, or to get out of the house every day, or to do the cleaning etc… but I AM having the odd good day, I have made it to a few social events, I am spending more time awake (haha!)  The thing with ME/fibro is that improvements don’t just follow a smooth line upwards – there are setbacks, big and small.  It’s easy to experience a setback and think you’ve gone back to square one, but that’s not always the case.  You have to step back and look at the bigger picture.  I couldn’t open my own Christmas presents in December as I was so poorly.  Today I made my own lunch.  That is a huge improvement and I need to keep reminding myself of that!

I’m still titrating my Amitriptyline upwards to try and help with my pain levels.  I am due to go to the pain clinic at the end of the month, which I have some hope for.  I am undergoing physiotherapy for my TMJ (jaw disorder) again, which I hope will keep the pain levels manageable.  It’s all a work in progress… as it has been for almost two years now!  Whilst there isn’t a ‘cure’ for ME and fibromyalgia, I remain hopeful that I’ll find the right combination of medication and treatments which will mean I can lead a somewhat fuller life.

Courage quote


If you have a chronic illness, how are you coping with it?  Do you find it difficult to stay hopeful, or are you a naturally positive person?  Let me know your experiences in the comments box.