Thursday 26 February 2015

An intro from Victoria

Hi, my name is Victoria and I am one of the health champions.
I volunteered as I wanted to give something back to this amazing clinic, as well as seeing if I can help others in similar situations to myself. I have PBC and struggle with what has recently become severe pain, as well as chronic fatigue. I have been diagnosed for 7 years, but have had chronic fatigue since I was 14 so I don't really remember feeling well. (My memory is truly awful! 😜)

I have been attending the CRESTA clinic since the start of last year and have found it extremely beneficial. I have been seeing Kate (Occupational Therapist) to support with my getting back to work, which has been a huge help, support and a wealth of hints and tips that I have built into my daily life, as well as her providing guidance to my GP and my employers to support me in this process. Vicky (Physiotherapist) has been amazing. I have attended 2 courses of her excercise class, this has enabled me to stregthen my muscles, stop doing things which were bad for me, and also meet some great people in the classes, share stories of how we are all coping, and support each other in our progress upwaqrds, as well as blips which can often send you spiraling (or is that just me?).

My condition has been getting worse over the last few years and recently I have had to take a lot of time off work and change my role due to only being able to work part time at the minute. Kate and Vicky's help with this has been vital to my physical and mental well being in manging being off sick from work, as well as attempting to return and working part time hours. I am still slowly building this up to hopefully be back to full time soon.

Previously to attending CRESTA I was managing with a highly supportive GP practice as well as seeing my consultants regularly, but I was feeling as if I was getting no where in terms of managing my condition on a day to day basis, and learning to accept the things that I am unable to do anymore. The accepting part is the bit that I have been struggling the most with. Although I have been struggling with this condition since my teens I have always managed to do the things that I wanted to through pacing myself and being a ridiculously planned person. These days this is not possible. I can't go to dance classes anymore which is a huge thing for me as I have been dancing since I was very young. I am aiming to be able to go swimming again by the end of the year and Vicky is helping me towards that goal with the exercise classes being the first step. I now complete the exercises myself at home and am progressing slowly with my strength and stamina. The next step for me will be to go to a pool and just walk in the water. Each new step is terrifying, and I have to find a friend to go with me incase this totally wipes me out and I can't even get out of the pool!! (The joys of the things you need to think about when dealing with chronic fatigue!!)

In terms of accepting the limitations of what I can do now I wrote this at the start of the year to guide and focus myself through any bad times.

My philosophy is that Happiness is the only goal!

I have been struggling to stay positive these past few months. I haven't been feeling "why me" just a bit sorry for myself and sad for the things that I might not be able to have in the future. I worry that I'll never meet a long term partner, never get married and have kids, and even if I do, will I be able to look after my kids? Will I be able to give them the lives that I want to? Taking them out, playing games, taking them to the park and running around with them, or would I be the mum who looks on from the sidelines, unable to join in? Would I be the mum in the wheelchair, or the one who has to go for naps everyday? I do not want to be someone that my family has to look after, so do I resign myself to being alone? To being a fantastic auntie? Do I give up on finding a partner so that I don't have to drag someone else into my life? Will I be able to work full time? Can I afford to look after myself on part time work? Then how long will that last? And what do I do then?
I really don't know the answers to those questions yet. I don't know if I'll ever find the answers to many of those questions as my health is so unpredictable, but I do know that I want to believe that I will be able to have everything that I want in my life, and if that looks a bit different to what I would ideally like it to be, then so be it!
Life very rarely works out exactly how people want it to, things happen, plans change, partners change and life sometimes just kind of happens to you.

I have decided that I am going to direct my life as much as I can. Looking after myself, eating well, exercising as much as I can, spending time with family and friends, having holidays when I can, working as much as I can, planning for the future as much as I can. The key phrase here is "as much as I can" I am also going to try and just let life happen to me, to see how things go, to try and relax about health downturns and celebrate the up turns, to relish every good thing in my life and find the joy in the small things every single day.

For the last year I have been keeping a "happy" diary, I record all of the things that make me happy every day. This makes me focus on the good things, remember the little things, and let's me look back and realise how good my life is whenever I am feeling a little bit down. I am going to find a lovely book and continue this habit into 2015 as it makes me happy. Happiness is what I am striving for. Yes I would love my own house, nice furniture, a matching set of towels, nice clothes and jewellery, a fancier car, but I am fully aware that these things are not important. I am very lucky. I have a condition which is not terminal, it is merely limiting. I have a large circle of friends and family who I can ring up and cry at, or ask them to come over with food for me, or take me out for lunch, or drive me to doctors appointments.

I am loved, I am needed and wanted in people's lives. I am important. And ultimately I am happy.

Since writing this at the start of the year I have met someone who is starting to look like a permanent partner, who is understanding and supportive of my condition and encourages me to look after myself. This is amazing and scary at the same time but I am trying  to embrace it. Oh... I also have a lovely set of matching towels 😊

I am interested in getting some kind of support group set up for people to discuss how they manage their lives, balancing all of the things that we all have to fit in, looking after ourselves physically and mentally. I am hoping to share best practice, hints and tip of things that work and truly have a positive experience of supporting each other in navigating a balance in life.

Sunday 22 February 2015

Dates for your diary!

The lovely Angela has arranged some get-togethers and all fatigue CRESTA patients and staff are very, very welcome- we'd love to see you there! All the details are below:

Any illness can leave you feeling a bit isolated. We are here to help you take those first steps back to a social life, or add to your existing one. Come and meet some very friendly Champions/fellow patients at one (or more!) of these get togethers:

08/03/15 @ 12 Tyneside Coffee Rooms
16/03/15 @ 12 CRESTA cafe (straight on instead of right to reception)
17/03/15 @ 11:30 Library room at union rooms

22/03/15 @ 11:30 Discovery Museum Heritage and Vintage Fair
23/03/15 @ 12 CRESTA cafe- cancelled 
05/04/15 @ 11:30 Baltic cafe- cancelled

13/04/15 @ 12 CRESTA cafe- *date added*
16/04/15 @ 11:30 whistler tea room just off Northumberland st- cancelled

25/04/15 @ 11:30 sunderland winter gardens - cancelled
06/05/15 @ 6 goose - cancelled due to insufficient numbers
17/05/15 @ 12 cumberland arms tynemouth
30/05/15 @ 11:30 northern stage cafe bar
June 13th at 11:30am- Cafe @ Laing June 28th at 12 noon- Royal Station Hotel Carvery- £11.25 x3 courses
Saturday June 28th at 12 noon- Royal Station Hotel Carvery- £11.25 for 3 courses
Thursday July 9th at 6pm- Union Rooms, Westgate Road
Friday July 17th at 11:30am- Blakes, Grey Street- cancelled due to insufficient numbers
Monday July 20th- not a 'social' as such but Jason Ellis is talking about 'Getting a good sleep in a big bad world' at Dance City Cafe 7-9pm (free)
August 1st at 11:30am- Northern Stage Cafe Bar venue change
Saturday August 1st 11-1 Brunswick Church room 2 Support/friendship group
August 22nd at 11am- venue change: Whistler Tea Rooms (vine lane, just off Northumberland street)
September 8th at 6pm- The Goose, Newcastle
September 26th at 12 noon- Cafe @ St Mary's Cathedral- cancelled
Saturday October 17th at 11am Northern Stage Cafe - thanks to all that came
Saturday  30th Jan 2016, 11am at the cafe at the Laing art gallery, Newcastle - lovely to see everyone
Saturday  9th Apr 2016, 11am at the cafe at the Laing art gallery, Newcastle

More dates all be added for later in the New Year! watch this space :o)

Housekeeping: Minimum of 4 people for an event, or the event will be cancelled. 
All events are intended to be friendly, relaxed and supportive, however, they are not intended as a support group. If it is a support group you are interested in, please contact us on the email address below, and we will do our best to get the relevant info to you.
All events are open to patients, fatigue CRESTA staff and clinicians. Please bare in mind that these events are not hospital appointments, and individual health concerns should not be raised at these events.
Finally...enjoy, and we look forward to meeting you!!
If you would like to come along to any of the above, would like more information, or would like to put forward your own ideas, please contact us at:
Crestachamps@gmail.com
or on our Facebook page - https://www.facebook.com/CRESTA-Fatigue-Clinic-Health-Champions-1555500658041903/

While it is really useful if people can give us an idea whether they are able to come or not, so that we can check each meet-up is viable, get contact details for if we need to cancel, and establish numbers to book tables etc if necessary, we have chronic illnesses ourselves so are fully aware that people may need to back out last minute due to illness! We may need to do the same though, which is why we'd really appreciate if you could email us at to let us know that you intend to come, so that we can let you know if we have to cancel. Thanks!

Monday 16 February 2015

Hello and welcome!

Hi, I'm Jess and I'm one of the first generation of health champions working with the fatigue CRESTA (Clinics for Research, Evaluation and Service in Themed Assessments) at the Campus for Ageing and Vitality in Newcastle upon Tyne in the UK. The fatigue CRESTA is focused around diagnosing and supporting those with chronic fatigue as a symptom of chronic illness; a team of health professionals with different skills and expertise work together to help patients to learn to manage their conditions and optimise their quality of life.

The health champions are a group of patients aiming to enhance the experience of patients of the clinic and this is the first post on our shiny new blog. It is just about how things have got to where they are, from my perspective. I'm currently leading the IT side of things, but there will hopefully be contributions from other health champions, all with their own unique stories, along the way!

Personally, I've been a patient at the CRESTA fatigue clinic for about 9 months, as I have ME/Chronic Fatigue Syndrome and Neurally Mediated Hypotension/Vasovagal Syncope, as well as a few other associated problems. I've actually been ill for about 5 years (with about 1 year severely affected) and have been under the fantastic care of various members of the ME/CFS team for most of that, but autonomic problems were suspected just over a year ago, and that's when I was referred to Prof Newton at CRESTA, and the NMH diagnosis followed. I'm unfortunately rather well acquainted with various hospital departments, but the CRESTA looks and feels totally unique, and basic autonomic testing was done at the clinic directly before my first consultant appointment which was so much more convenient than having the testing on a different visit and waiting for results to be sent through. I've also been involved in some research which has been interesting, and I like the idea that it could help improve understanding and eventually lead to treatment.

The fatigue CRESTA is normally for patients who can't access the ME/CFS services, as they don't meet the criteria due to other conditions, but patients like me with suspected autonomic dysfunction can be seen at the clinic.

When the opportunity to be involved with the health champions project was offered to me, I was unsure what would be involved or what I could offer, but was keen to help the clinic and other chronically fatigued patients if I could.

I went to the first training day, and still really didn't know what to expect, but it was interesting to meet others with different fatiguing conditions. I went to the second training day and got to know some of the others a little better in the morning. The afternoon involved a big meeting with different health professionals, researchers, people from Altogether Better and NHS England, as well as those of us training to be health champions with the clinic. It was a big discussion about what we hoped to come out of the project and working out how we would all work together so that it would be mutually beneficial. The thought of it was scary in a way, but in reality it was very non-intimidating and everyone was excited about the project and very respectful of one another. I was in a group with the fatigue CRESTA's physiotherapist, several researchers and a few other health champions. Others worked with consultants (including Julia Newton from the fatigue CRESTA but also 1 or 2 others from interested, relevant departments) and occupational therapists and psychologists. It was a really interesting mix of people, all with an interest in illnesses causing chronic fatigue, including, but not limited to, ME/CFS. It was really nice to sit there amongst it all, aware of the fact that all the people in the room were there because they cared about, and wanted to improve the experiences of, patients with illnesses like mine.

Since then we've met as health champions on a number of occasions, and have worked with Prof Julia Newton on several of those occasions to gain a better idea of what the CRESTA is all about. We have been working out how we can complement what is already a fantastic clinic for patients with chronic illnesses causing debilitating fatigue.

We believe in the clinic and what it offers so intently that we are wanting to get the word out about the clinic to all those that might benefit from the multi-disciplinary approach that it offers, so that's one thing we're intending to work on.

We are also currently looking at setting up some activities to get patients of the clinic together in a more social setting for mutual support. We are also thinking about getting groups together to share knowledge and information relevant to our conditions. We really hope people will embrace what we are trying to do, and hope people will benefit. 

We have a lot of ideas of our own, but would welcome ideas from others! The CRESTA clinics are already unique, but hopefully as health champions we can help to add yet another dimension to what the fatigue CRESTA offers its patients.