Thursday 30 August 2018

August Birchbox Review

This month's Birchbox was designed by Etsy seller Nikki Strange. This month's birch box design came as a unique design and there was a chance of receiving 1 of 10 designs made by Etsy sellers and the theme was "Live a life beautiful".

Inside I received...

Eye Shadow Crayon in 'Fetch' by Dirty Little Secrets
This product I got to choose the shade and I've tried this product out and I love it! The shade is beautiful subtle; it's very neutral with a little shimmer. It's very easy to put on as not brushes are needed and it has a lovely creamy texture. Just scribble a bit onto your eyelids and blend in with you finger and off you go! It can also work as a base coat of powder eye shadows and it can also be used as a highlighter so two-in-one - fantastic! And it's lasts all day but it easy to take off at the end of the day. I got this as a full size product and it's a decent size and a little goes a long way so it's going to keep me going for a while. The RRP of this product is £10.50.

CLÄ’ Cosmetics Melting Lip Powder in Red Cherry
This little sample, tough it may a sample a little goes a long way. It can be used as either a lip colour or a cheek tint and goes on as a lovely matte finish and as a bonus it's smudge proof so is long lasting throughout the day. The RRP of the full size product is £15

Dr Botanicals Pomegranate Regenerating Sleeping Mask
This product I have tried out. Just cleans your face before bed and apply a small out and work into your skin and you wake up with lovely refreshed skin. It smalls amazing too. "The antioxidants [in this product] will rejuvenate tired skin so when you'll wake to a glow, hydrated complexion". The RRP of this product is £14.90

ModelCo®  Eye Define Crayon Liner
This was another full size product which I haven't used yet as I'm wanting to use up my current eye crayon. It's a twist-up crayon, so no need for sharpeners (yay!)  and lasts all day, perfect! The RRP of this product is £11

Bumble and bumble. Don't Blow It Hair Styler
This was a sample size and not one I've used yet but I love Bumble and bumble's other products from previous purchase's and Birchbox's but I'm eager to try it out as I often don't blow dry it's designed for towel-dried hair which isn't going to be blow dried as I often don't bother to blow dry my hair. The product uses "plant based conditioners to enhance you hair's natural texture and shine". The RRP of the full size product is £24.

All products can be bought in full size from the Birchbox Shop and if you wish to subscribe to Birchbox follow this link to earn £5 to spend in the Birchbox shop and each month new subscribers also receive a free gift. Birchbox costs £12.95 each month including P&P and there are different subscribing options and you can cancel anytime.

Thursday 23 August 2018

Between a Rock and a Hard Place

In the year I've been at group therapy (and I still have enough 11 month to go) my symptoms, especially my various types of pain and especially my fatigue have gotten worse because I have to put it aside to go to group even when when my body is screaming at me to stay home/in bed and rest and the staff there I feel don't understand or what to listen to my physical health stuff; they want me to leave it at the door and focus on my mental health (despite my physical health having a great impact on my mental health) and they blame my fatigue on my medication which is keeping me afloat and I'm saying over and over again "it's not my my meds, it's my M.E." [that's making me so tired] but they don't want to listen and I'm left feeling voiceless and wishing I wasn't physically sick. 

Yesterday I called up my contact for the Complex Care Team, she's just the admin but was very understanding when I explained my predicament with the group therapy staff not understanding or listening to me about my physical health and them wanting to reduce my medication (even though they're not Drs). Hopefully soon I'll be assigned a key worker in in team so I can have someone to talk to and help me unmuddle things (and have a big MDT (Multi Disciplinary Team) meeting with my care co-ordinator from the group therapy to explain and discuss my needs, physical and emotional) as I'm just declining and at the moment I'm wondering if I can continue with group therapy but if I do I will lose all access to mental health care and I can't do that so I'm in a rock and a hard place and my body is failing me.

Before I started the group therapy programme I was able to pace myself throughout the day. On my bad days I was able to stay in bed and rest and do what I can and I was able to spread my energy out thought out the day and get up when my body was ready and take rest/nap breaks when needed and do what needed to be done when I had full capability. Now jobs get left - my bedroom is a mess as I don't have the energy because my days off from group therapy are spent resting because I'm so drained and when I get home I just crash for the rest of the evening until I drag myself to bed because I'm forced to get up earlier than my body likes and leave the house and sit through groups and fight the fatigue and get moaned at because I'm nodding/switched off and my medication is being blamed when there should be more understanding of my M.E. and FND.

The group therapy staff are also putting stoppers in the way to me getting to rehab in Leeds which really angered me when they brought it up in my last CPA (Care Plan Assessment) and they want to speak with Professor Edwards (when I don't know what they're saying to him) about my mental health and how that might make my ineligible for the rehab in Leeds at this present time as they don't think I should be going because of the state of my mental health even though like I've said a big chunk of that is caused by my physical health, which just sucked away all my hope of getting some help for my FND and M.E. because I've been waiting for this rehab ever since I first saw Professor Edwards last year. I think I need to find out and request that I be kept in the loop with all conversations with Professor Edwards and the Leeds rehab centre to ensure the correct information is getting passed on?

I just really don't know what to do. I might have to take some timeout of group therapy if this hypermobility sessions come up so that might give me a welcome break to at least try and look after my body in-between travelling to UCLH.

I think when I go to group therapy later on today (it's currently 5.40am and I can't sleep) I'm going to have a conversation with my care co-ordinator about everything. For now, I need to try and get some sleep.

Wednesday 8 August 2018

Hypermobilty Eduction Session - 7th August 2018

So yesterday's appointment was a bit different.

Patient Trnaspost arrived to pick me and Dad up. We took a pit stop at Peterborough Services and I had my obligatory Costa along with their mini gluten.dairy free cherry bakewells.

We got there a little late as the crew member diving couldn't find the hospital and I was madly trying to get in touch with literally anyone at UCLH to say we was coming and one our way as the appointment letter said if you arrive late you may be turned away and I desperately didn't want that to happen and have a wasted trip, plus I'd made sure that the appointment was during the summer holidays so Dad could come with me (he's a teacher). 

So once we got to UCLH it was a made run, (well, Dad running pushing me in my wheelchair) from the main UCLH building to the Education Centre. We was a little late but we got in most of the session and the physio who took the session is going to email me the power point.

The session covered things like what is hypermobility, pain, symbols and management of symptoms, nutrition and abdominal symptoms, autonomic issues/symptoms and tips for management, posture and footwear (so no more ballet pumps for me!). It also covered the two treatment pathways following the session which is the COPE Pain Management Programme and the Hypermobility Exercise Programme.

We (Dad and I) had a good chat with the physio afterwards, asking things like what of the two treatment options I should do first (I went for the pain management programme first and then to to the excise programme after so hopefully when I do the exercise programme my pain would get in the way so much). I was also anxious about how the exercise programme would affect me M.E and the physio had some knowledge of M.E. and so reassured me that they would work within my capabilities and not push me to breaking point and would build me up slowly at a pace I can tolerate both in terms of my hypermobility and with my other illnesses.

When the physio covered the slides on autonomic issues - things like heart rate, temperature, dizziness - all pre-seizure symptoms so I'm going to trial some of the advice for managing autonomic symptoms like increasing my salt intake (easier said than done as I really don't like salty food), drink more and have smaller meals as the amount of times I have seizures after meals is rediculous but apparently having smaller meals reduces autonomic symptoms as all the blood isn't rushing to to the digestive system.

So all-in-all it was a very productive and valuable day. The physio wasn't sure how long the wait was for the COPE Pain Management Programme but hopefully it won't be too long and then when I've done that I can be referred for the exercise programme.

I left feeling so lucky to be under UCLH now for my hypermobility after so many years of locally hitting brick walls and no one really listening to me or doing anything to help and support me. I have an amazing team of different specialisties that all specialise in hypermobility related complications and other co-mobidities.

Before heading back to the ambulance we took a quick toilet break then whizzed over to the main UCLH building to grab a coffee and a snack and then we set off home.

I had a few seizures on the way back home, probably because I was so tired but travelling via stretcher now for my London trips is defiantly the way forward and I had a nap and I'm loving my new beats headphones as listening to music/audiobooks defiantly help pass the time on long journeys. 

Monday 6 August 2018

UCLH Gastroenterology Appointment - 4th August 2018

So on Saturday I had another trek down to UCLH in London for a Gastroentrolgy appointment, one that came from my appointment with Dr Kazkaz (rheumatologist).

As the appointment was at 3.45pm I didn't need to be up mega early. Patient transport picked me up just after 11am.

The journey there was pretty uneventful and we had a pit stop at Peterborough Services, the only hiccup was the struggle to find the hospital - we could see it over the road but didn't know how to get over to it and the it was a case of finding where ambulances could park and then it was a case of finding the right building and clinic, but with a but of guess work we finally got there.

TW: Picture of needles

The Doctor I saw was very knowledgeable and reassuring and he's put a plan in place for me to start on a new medication (which I can't remember the name of and I can't read his handwriting!) and another treatment called bio feedback which I forgot to ask what that was, so I'll have to do a bit of googling. He also gave a name to what's going on but again I can't remember the name of it so for that I'll have to wait for the summary letter which should hopefully have it on. He also looked up hospitals closer to home that he knew specialised in hypermobility/neurological related GI issues should in the future things progress and I need more intensive care to save me travelling down to London a lot. He ordered a bunch of blood tests which I has after I saw him and I'm having a follow-up appointment in 6 months time.

On the way home I had a couple of seizures and again we stopped of at Peterborough Services. My new headphones came in perfectly for the journey there and back and I just sat and chilled listening to my iPod which help distract me from the nausea.

I got home around 9pm and got something to eat and drink and watched an episode of something on Netflix then headed to bed.

Sunday 5 August 2018


Guest poem by published poet Emily in commemorationof the centenary year of the Suffragettes who finally succeeded in their mission to get the vote.

Emily's poems are published in a book called 'Ballerina' which is published by Tomser Cat publishers, a link can be found here.

"In commemoration to all those who defended my voice,
long before I could speak"...

Suffragette I'll stand beside you. Speak when you're too worn when countries burden you when history re-writes your legacy, I will stand in your stead. Lead those into unity Hold composure and while others turn and forget I will always speak of your victories. I will carry you on my voice, as my strength and my memory. Though your politics, your leaders And your own might discriminate I refuse to cover, turn my back on you. One torch might burn in dark solitude But if held high It can spark the actions of millions.

Wednesday 1 August 2018

Gunby Hall - Day out with Dad

So on Monday Dad and I went to visit a National Trust place in Lincolnshire called Gunby Hall. It wasn't actually that far away and only took about 45 minutes in the car which was nice and manageable. 

We arrived around 12.30pm and sat in the courtyard and had our packed lunch. We had nice weather for the day - not too hot but not too cold and no rain.

We got a map of the wheelchair accessible route round the garden and so after lunch we set off round the gardens and there was lots of beautiful flowers in bloom. 
It wasn't 100% wheelchair friendly as most of the paths where gravel and I had to rely upon Dad pushing me. Some of the paths where also a little narrow, but I have a narrow wheelchair so we managed okay there was also some mini steps that where marked as grass ramps on the map but they wasn't any so at times Dad struggled especially with the tip guard being so low on my wheelchair (which needs looking at) but we did manage it. So if you're a wheelchair user I would recommend that you'll need someone with you if you're in a manual chair, it may be easier in an electric wheelchair, but that depends on your chair and I've never used one and you'd need a narrow-ish scooter too to get round some of the path but I'd say it is possible. But all-in-all it was a pleasant wander round and I'd say in terms of accessibility it depends on whether you can walk around as it's not huge and it depends on your wheelchair/scooter.
There was also a church to visit but that wasn't part of the National Trust and we didn't take a visit to that. 
They also go guided tours of the gardens which tells you about the gardens and grounds and the plants there, but we didn't go on one.

We then stopped off at the tea rooms and sat outside and had a coffee and cake.

Next we headed into the house. This wasn't wheelchair accessible so I used my crutches and there where seats dotted around to sit on and rest.

In the first room we entered there was someone playing the piano which was lovely to listen to (see video). We wondered round and unlike most National Trust properties all the items in the house belonged to the house. We wondered round and peered in the various rooms and I enjoyed looked at the titles of the books dotted around on shelves and in the library and also spotting William Morris wallpaper and other wallpaper designs (textile design geek here).

It wasn't full day out which was nice as it wasn't too tiring. I was in a some pain from walking round the house but unfortunately due to the nature of of old houses which are often listed buildings which the National Trust look after they are not built for wheelchair accessibility unfortunately which makes it hard when you're like me an enjoy visiting places like the National Trust.

All-in-all it was a lovely afternoon out and somewhere I'd recommend visiting.