M.E Clinic // My Experiences – Part 2 of 2 // Chronic Illness

Hi guys

Today’s post is part two of two – you can find the first post here.

Switching to ME Clinic Home Visits

At this point (towards the middle/end of 2015) they decided to switch me to home visits and somewhere down the line there was mixed communication.  I was given the impression that it would be more of a living assessment and they would give suggestions on what I could change around the house to make daily life easier, but that wasn’t the case at all!  I actually cancelled my home visit weeks before, as I was due to be moving house shortly and didn’t want to waste their time assessing somewhere I would no longer live.  Once they realised, they told me that wasn’t what the visits would entail and we arranged for my first home visit once I was settled into my new house.

Home Visit 1

Two women come for the home visits – a Senior OT and a nurse.  They both have very specialised training in M.E.  I’d met them both before, as the clinic actually put on open days once or twice a year, aimed at helping family, friends and carers understand the condition and manage it better at home (really useful!)  The first session ran over to 1.5 hours and was exhausting, but so worth it as it was very enlightening.  They took me back to the very beginning of my ill-health (aged 15) and helped identify precipitating factors such as various illnesses, operations, traumas and stress.  One thing to note – they really don’t mind you being in your PJ’s with messy hair… they’ve seen it all before!

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M.E Clinic // My Experiences – Part 1 of 2 // Chronic Illness

Hi guys

Today’s post is about my experiences with the NHS ME Clinic over the past 24 months or so.  I have mentioned the odd bit here and there, but thought putting it all together in one post could be a useful resource for those who are being referred themselves and would like to know what to expect.  I have split this post into two parts as it’s quite long and I know that can be hard to deal with as someone with chronic illness and brain fog!  Part two can be found here.

Initial Referral and Clinic Visits

I was referred to the ME Clinic relatively quickly after being diagnosed, as there is a limit to what GP’s can do to help chronic fatigue.  They are better (well, a little better…!) at dealing with the pain side of things, but tend to leave the fatigue side to the experts – at least in my area of the UK (Leeds).  Firstly, I was very lucky to live somewhere that has an ME Clinic, as there aren’t too many in the UK.  Some people aren’t referred at all; others have to travel quite far to attend (which is a joke in itself, as often these people aren’t actually well enough to travel).

My first appointment was with a Consultant and was very much a fact-finding meeting.  She took down a very detailed medical history, together with all of my symptoms at the time, what I had tried to help myself and what medications I was taking.  At this point in time, I was working full-time.  Not long after that, as I started to get more ill, I changed my hours to 4 days a week to try and manage my fatigue levels and attendance.

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.

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.

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!

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

Lots of love,

Katie xxx

Sleepless in Leeds // Update!

Hi guys

Just a little update as I’m aware I’ve only posted once this week, when I usually try to post two or three times a week.  As you all probably know, I have several chronic illnesses so I can never be completely consistent with my blogging as my health just isn’t good enough.  The last week or two have been a bit of a struggle, as I’ve been my usual level of unwell but have obviously had certain things to do for Christmas.

I’ve done my shopping entirely online this year, which is easy enough but still takes energy.  I’ve also wrapped everything and written all of our Christmas cards.  Now for a healthy person, that’s not much of a big deal, but for me it has taken up a lot of my energy and has had to be done in several stints, so there hasn’t been much spare juice left for blogging.  I’ve tried to stay active on social media and keep you updated daily as to what’s in my You Beauty Advent Calendar, so I hope you don’t mind too much!

Photo Source: Why Evolution is True

I’ve got lots of beauty boxes to review for you (sneaky preview below!), which I’ve taken photos of but haven’t had the energy to actually write about yet.  I’m hoping I’ll get them all to you before Christmas though!

It is 12:30pm on Sunday while I’m writing this, and I haven’t actually slept a wink yet.  I’ve been awake for over 24 hours, so as you can imagine, I’m not feeling great…!  I was kept awake with pain all night, and now my body is totally confused and out of sync, so I’m kind of ‘tired but wired’.  I’m going to try and have a nap now but I don’t feel like it’ll happen.  I’m so exhausted I actually feel physically sick!  Anyway, enough moaning – I just wanted to check in and say hi!

Enjoy the rest of your weekend.

Love,

Sleepless in Leeds!

UN International Day of Persons With Disabilities – 3 December

Hi guys

I was made aware that yesterday was the UN’s ‘International Day of Persons With Disabilities’ (much as the awareness is great, I think they could use a more catchy name!)

As you most likely know if you read my blog regularly, I suffer from several chronic (and invisible) illnesses.  I have IBS, but this doesn’t really affect me day to day.  Luckily, it is fairly mild and only flares up occasionally.  More disabling are the ME, Fibromyalgia and TMJ I suffer from.  If you’re unsure what any of these chronic illnesses are and what causes them, I have a lot of information on this page.

Being very unwell obviously has a hell of a lot of downsides, but one of the less obvious ones is that a lot of illnesses (chronic or otherwise) are ‘invisible’.  What this means is that someone cannot tell by looking at you that you are unwell.  I personally do not need to use a wheelchair (I just don’t get out much!), however I’ve spoken to people who have been tutted at or disapproved of even when out in public in their wheelchairs…you would think that this would make illness or disability ‘visible’ enough, but I’ve heard many tales of people seeing someone stand up from their wheelchair, and then thinking they are ‘phony’…!  It seems to escape some people that you don’t just have to be paralysed to use a wheelchair, many people have very limited mobility or simply get exhausted standing upright for long.

There have been many stories on social media and the news this year about people receiving abuse – for example this woman who parked in a disabled spot and received abuse as she was seen walking.  She could walk, but doing so was very difficult for her and caused her a lot of pain.  For simply trying to nip into a supermarket, she was left a note telling her, “Being fat and ugly doesn’t count as a disability – park elsewhere”!  I can’t begin to imagine how upset she must have been.  It is often difficult enough going out in public when you feel very unwell, weak and vulnerable, without something like that happening to you.

So the point of this post was really to draw attention to the UN’s International Disability Day and spread awareness that not all illness or disability is visible.  My advice if you are questioning whether or not someone is invisibly ill is, either get on with your day and don’t feel the need to judge, OR simply ask them.  Show the same kindness, sensitivity and compassion you would to a loved one. I’m sure if asked politely, they would be more than happy to tell you what they are suffering with, and why they need extra help.

Put simply – just be kind.

Finally, Medicare First have put together an infographic about the most common invisible illnesses and disabilities.  I have cut out the most relevant to me, below, but you can view the full version on their website here.

TREsemme // Instant Refresh Volumising Dry Shampoo // Review!

Hey guys

I know we all like a bit of dry shampoo… for any fellow chronically ill people, it’s an absolute essential, as sometimes standing in the shower to wash our hair just isn’t possible.  I know I used to use it sometimes before getting ill too – it’s nice to give your hair a quick refresh, or get an extra day out of a hair wash when you’re busy.

I’ve tried loads of dry shampoos – the most well-known brand Batiste, to Superdrug own brand and Ruth Crilly’s newish range of dry shampoos, CO-Lab.  Without a doubt, this is the best brand of dry shampoo I’ve tried so far.

TREsemme dry shampoo claims to ‘refresh and revive hair without water’.  You can buy several versions of this product – from basic, to smoothing, renewing and colour care, but I am reviewing the volumising version.

With a lovely fresh salon smell, this dry shampoo is used like any other.  Give it a good shake, lift sections of dry hair and spray into the roots.  Massage in so that it is fully absorbed and then brush through your hair.

I’ve tried many dry shampoos, and often find that they fall short of their claims to make your hair look freshly washed.  If my hair is already greasy, they often make it feel better but it still doesn’t look great.  I find that this TREsemme one does actually make my hair look much cleaner and fresher.  It also feels much better (it is infused with mineral clay and citrus) and smells gorgeous!  I have black hair and used to buy the brunette Batiste, as normal dry shampoo can make me look like I’ve turned grey!  Although this TREsemme Instant Refresh is white, it doesn’t leave a grey residue on the hair and is invisible once it’s been rubbed in.

If I’m having a bad week and struggling to get out of bed, this dry shampoo definitely gives me another couple of days until I have to wash my hair.  I also love how fresh it smells!  Although it’s a little more expensive, I can’t see me using any other dry shampoo in the future, unless something totally new comes out.

You can pick it up in Boots, Superdrug and supermarkets, or buy it online here.

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Do you use dry shampoo?  Which is your favourite?  Let me know!