As I’ve said before new places make me nervous as I don’t know about access, toilets, ease of use.

The night we were down there was so warm we ate outside which is good as we got to the restaurant and there were steps to eat in.

The seafront at Bournemouth is long and flat allowing for a great roll along. Unfortunately they were doing works on one section so walkers and runners could use the temporary path but not wheelchair users which was annoying but there was an ice cream stand which was brilliant.

For lunch we went to The Noisy Lobster on Mudedord sea front. When booking at a restaurant I always put that one of the guests is in a wheelchair so the table isn’t shoved in a corner hard to access.

I have been to this restaurant before and do like it for the following reasons

The food

The entrance is a permanent ramp at the front

There is a proper disabled loo

The staff are so friendly and amenable

Cons

The tables are quite close together

The disabled loo is quite small

So it shows so many places have pros and cons but for this trip the pros outweighed the cons

At the end of December I booked a wheelchair and carer seat at Bournemouth International Centre for the Blue 25th anniversary tour.

I knew I wanted my friend Siobhan to come with but had yet to ask her.

I set about ringing hotels that were listed as wheelchair accessible but I’m always suspicious until I’m there.

One hotel I rang I checked 3 times it was an accessible room and 3 times they said yes but I still didn’t believe them so checked again. They then admitted they didn’t have any accessible rooms but said they could put me on a ground floor room to help (it doesn’t help and I don’t like people pretending they have what I need when they don’t)

I rang another hotel and unfortunately their accessible room was taken on that date but they were so helpful and upfront I asked if the bathroom had room for a loo frame I would take.  As they didn’t know what it was they asked to ring me back. 2 minutes later they rang me back having googled it to say yes so I booked it.

I then had to ring them again in March to check the room was big enough to wheelchair around it due to my broken ankle. It was and again they were so helpful even reserving a blue badge parking space in their car park for us.

The hotel had a ramped entrance at the front (not a temporary ramp or at the back which I hate) and the room was on the ground floor with a lift to all floors. It was also directly opposite the BIC and only a minute from the sea front.

So for me the Seastone Hotel was perfect and accommodating to my needs.

However just a reminder Bournemouth is hilly so maybe not great for a manual chair which I had as even my friend found it hard work.

Blue were amazing although the drunk people next to us were annoying and Siobhan had to stop them walking into me a few times making us both worried about my ankle.

A week ago I broke the bottom of my fibula. For a week I’ve navigated in an air boot cast and I can tell you Ataxia and a broken fibula do NOT mix.

The hospital offered me crutches but considering I can barely balance normally I declined and so have been navigating the house in a wheelchair.

The dog walker comes most days to walk my dog, mum has come by most days and has helped me immensely, my neighbours are on standby and so I’m comping but holy crap it’s hard.

The dog (Rupert) has really struggled with this all and has turned into a needy mess. He does however love my wheelchair

Next week I see the staff at the fracture clinic to see how it’s healing. I also have a referral for a bone density scan because of how easily it broke but with Ataxia I’ve learnt anything can happen including trying to open a window and breaking your tibula.

I know I’ve blogged about fatigue before but it’s apparent there is still misunderstanding about it

There’s a scale: regular people tiredness, fatigue, chronic illness fatigue, chronic illness exhaustion.

So when I say “I’m tired” it generally means I have chronic illness fatigue.

The problem is fatigue affects my balance, coordination and gives me night sweats which mean I don’t sleep as well and walking about becomes harder taking more effort to do things.

I generally only can manage to do one thing a day due to lack of energy and if something big is coming up I’ll have a “do nothing day” before it.

It has become apparent over the last 5 months that some people don’t understand this with the response on a “do nothing” day of saying several times “so you really don’t want to do anything today?” Along with not believing or accepting I can only do one thing a day and pressuring me to do more.

This week my parents moved house so I had their dogs for three nights and four days. It has utterly exhausted me even if I did love having them. I can’t risk walking about because I’m so tired my balance has gone and my physio had the joy of seeing the effect on me from Wednesday to Friday.

Today she kept telling me to lower my shoulders but understood they were high from being tense and tired so I may not have been able to lower them.

When the dogs were collected I admitted how exhausted I was by them and the response “were tired too”.

There’s a difference between your tired and my exhaustion. Mine leaves me emotionally drained and ready to cry at anything

For my Crohn’s Disease and Arthritis I have Infliximab every six weeks. Most people are on it 18 months, I’ve been on it over ten years.

It’s desired effect has reduced so in the last few years so the amount has been doubled and the time between infusions shortened.

Clinical guidelines say a level of 8 is okay but above 12 has shown to have the best results and unfortunately as expected my levels have dropped from 13 over time so we’ve put a plan in place for when Infliximab stops working.

I have previously tried a drug called Ustekinemab but unfortunately it didn’t help my arthritis pain so that’s a no go so we have a plan in place for a different drug (can never remember it’s name) for when Infliximab stops working and I see my consultant in 6 weeks so we’ll discuss it further.

25 years ago I had a stoma after a subtotal colectomy. I had a stoma 18 months or so before insisting on an ileo rectal anastomosis because pooing into a bag age 12/13 whilst at boarding school with bitchy girls was horrendous.

My journey to my first big op was interesting. Symptoms of diarrhea and weight loss started age 7. I distinctly remember going for a colonoscopy and the nurse telling me “you’re very young to be here”.

And so began 5/6 years of medication, hospital appointments with a Gastroenterologist, phone calls with the gastro nurse and several blood transfusions to replace the blood I lost through diarrhea.

None of it worked and in the summer of 2000 the consultant recommended that the best next step was a colectomy which after years of feeling like crap I was vaguely all for but adamant the stoma would be temporary.

I was sent for a second opinion at GOSH and I have to say my experience and memories are not great.

They placed a nasal gastric tube for several days and no one believed when I said I felt sick. I wretched and the tube that started down my nose looped out of my mouth before continuing down my gullet. They just fed it back down and didn’t even give me anti nausea meds.

They did a colonoscopy and took biopsies which then made me bleed non stop and didn’t heal.

I was too tall for the bed they gave me.

I was desperate to be out of there so lied to them that I was fine so I could go home (that was not a fun journey).

A short while later I was admitted to Oxford John Radcliffe hospital and had an emergency collectomy.

Due to being so ill when I was admitted it took 3 weeks to be well enough for discharge with my new stoma bag and head home.

18 months later I headed back to hospital for an ileorectal anastomosis. Due to being well when I went in for surgery I was sitting up in a chair 24 hours after surgery.

Subtotal Colectomy

A subtotal colectomy is surgery to remove most of the large bowel (colon) while leaving the rectum intact, typically for inflammatory bowel diseases (Crohn’s, ulcerative colitis).

Ileorectal anastomosis

Ileorectal anastomosis (IRA) is a major surgery where surgeons remove the colon (colectomy) and then connect the end of the small intestine (ileum) directly to the rectum,