Relationships, chronic illness & intimacy.

This one is a requested post and the first time I’ve co-written a post! Since this post is about maintaining healthy relationships I’ve invited my partner to share his side of the story too. I will apologise now for elevated levels of sarcasm and any unnecessary use of puns featured in this blog post. Just…Continue reading Relationships, chronic illness & intimacy.

Temperature Regulation

Temperature Regulation Hints and Tips

Temperature Regulation is supposed to happen naturally. Unfortunately many people with complex health conditions find that this simply doesn’t work. As many of you may know I have Postural Orthostatic Tachycardia Syndrome (PoTS). Basically, because of my Ehlers Danlos my autonomic system is a bit wonky. I struggle to adjust to postural changes and experience a…Continue reading Temperature Regulation Hints and Tips

Pacing

Pacing – when is the Boom worth the Bust?

Symptom management is a really important part of living well with a chronic health condition. For symptoms like fatigue and pain, Pacing is an essential skill to learn. There is no easy fix for long-term health conditions but there are a lot of little fixes that can help. To make the most of these little…Continue reading Pacing – when is the Boom worth the Bust?

Rehab Update: Goal Tracker, Gymnastics, Capsaicin and University

Hello again and Happy New Year!! Sorry for the lack of posting lately! This will be the first of my post-rehab updates having completed the 3 week pain management course at RNOH Stanmore. If you haven’t read about my adventured there then please check the posts starting with ‘The Rehab Saga’.

The Rehab Saga: Happily Ever After

This was my last day at RNOH Stanmore (last half day anyway) I was up and dressed nice and early, we all shared a breakfast and were even joined by an ex patient who was back for her 3 month review, she talked to me about her progress and I’m feeling really optimistic. Its so…Continue reading The Rehab Saga: Happily Ever After

The Rehab Saga: Goal Setting, Red Hot Chilli Pepper (Capsaicin) and Swimming

So I’m getting really close to complete my rehab stay and today was mostly about rounding up the programme and making sure I’m as prepared as possible before going out into the wide world to continue my life. I overslept this morning (I’m blaming the antihistamines) but I did get up early enough to go…Continue reading The Rehab Saga: Goal Setting, Red Hot Chilli Pepper (Capsaicin) and Swimming

The Rehab Saga: Physio, friends, family and beer pong.

After struggling to wake up yesterday I was expecting to really struggle this morning, I was pleasantly surprised when I woke up at 7:15 and didn’t feel half bad! I hopped in the shower (and even washed my hair) before grabbing breakfast there were a couple of new faces on the ward this morning so…Continue reading The Rehab Saga: Physio, friends, family and beer pong.

The Rehab Saga: Maintaining change, Physio/OT and a visit from Addz

Up bright and early this morning but I felt pretty sleepy (I’m blaming the added antihistamines) I did eventually drag myself out of bed and get dressed in time for the Stretch class. It was a pretty small group of us today so we chatted a bit but got the job done, the Therapy techs…Continue reading The Rehab Saga: Maintaining change, Physio/OT and a visit from Addz

The Rehab Saga: weekend recap and balance training

This is the start of my last week its also the last of my 5:30am starts! The drive up took an hour longer than normal this morning so I was feeling pretty rubbish by the time we finally arrive, (kinda desperate for the loo too!) My first order of business after un-pacing was to request…Continue reading The Rehab Saga: weekend recap and balance training