Goodbye 2017 & Hello 2018



Dear Readers,

I can't believe I'm writing the final post of 2017! Where has the time gone?!

Pulmonary Hypertension has been quite at the forefront of the year, whether it's attending the PHA-UK conference, or generally raising awareness for Pulmonary Hypertension. I love being an Ambassador and raising awareness for Pulmonary Hypertension as it is a condition that people are not aware of and people need to understand what it is.

This year I've raised awareness by telling my story in the newspapers (EADT), going on the radio (interview), making a video (above or Youtube), working with the PHA-UK for PH Awareness Week, creating a new Facebook page (Tess and PH) tweeting on Twitter (@maritess_mt) and continuing this blog. Also huge congratulations to Capital B Media for winning 'Best Publication' for the Pulmonary Hypertension "EmPHAsis" magazine!





It's been a bit of a whirlwind year for me and Terry and probably one of the best and one of the busiest! They say buying a house and getting married are 2 of the most stressful things in life. We did both in 3 months...

We started off by getting keys to our own home and renovating it in time for Terry's Mum arriving from Australia for our Wedding. In the midst of renovating we celebrated Terry's Stag and my Hen do! I don't know how we done it or how we dealt with the stress, but we made the shell of a house into a cosy home in time for our Wedding.


On 27th April, Terry and I became Husband and Wife. It was a wonderful day celebrating with family and friends and I was well enough to walk down the aisle! It couldn't have gone any better and it was amazing to be symptom free to enjoy a much-anticipated day. Terry and I went on a Mini-Moon to Crete the day after the Wedding, where we both crashed out and relaxed for the entire week thinking about how much we had achieved with our home and our future plans as Mr and Mrs!



In the Summer, Terry and I caught up with friends, attended friend's Weddings and I closed down my music business as working evenings was taking it's toll on my health, but I received news of a new job which I started in September and really enjoy! 

Most of all we got a new family member. We travelled to Blackpool and picked her up. This is Izzy, our fur baby!

After the Summer my health was starting to decline and knew something was wrong. I managed to celebrate my 27th birthday, another milestone reached, with my friends and we all had a fantastic time! As I was still struggling, the Royal Brompton consultants and I decided to bring my hospital appointment forward. I was told I had deteriorated and new medications were needed. I started them that day, but I wasn't ready for the side effects that came with them! I battled through sickness and severe headaches, but I'm feeling a little stronger now and hoping they are starting to subside!



I had a wonderful Christmas with my family and I am really looking forward to what 2018 will bring. As 2017 was so good, it'll take a lot to beat it!!

However we will be celebrating my 10th PH Anniversary - wow 10 years since my diagnosis, I can't believe how much I have achieved after being given such a short prognosis. It is also thanks to the Pulmonary Hypertension team at the Royal Brompton Hospital, who have been amazing since my diagnosis with their continuous support and also the medication that the hospitals and PHA-UK fight for so we can have it to help us lead our daily lives. Keeping positive, keeping strong and living life to the full. There may be no cure, but there is always hope!!



Thank you to my friends for all of your support and friendship, but a huge thank you to my family, especially my Mum and Husband for everything they do and continue to do to make sure I have the best quality of life. Together we will live life to the full. This final picture sums me up perfectly!


Happy New Year Everyone!

Thanks for reading!

Deterioration = New Meds = Awful Side Effects

Dear Readers,

In November I found out that my PH had deteriorated so I had to start a new medication to help me to get back on my feet. I had to stay in my hospital (Royal Brompton Hospital) whilst they monitored my stats on this tablet, but my body took to it well and I was let out that same day, albeit rather late into the night!

I have now been on this new medication for a month now and gee that side effects are awful! I've suffered severe headaches and sickness over the last month. I'm hoping they will subside very soon, so I can enjoy Christmas next week! However if my symptoms haven't improved then I'll have to change to a new tablet and hope I take to them better. I really hope my side effects subside soon as I have noticed my PH symptoms have improved, so they're definitely doing me good, even though I feel like they're doing me in! Haha!

Anyway, as always I keep on going and get on with my life as much as I can, but in the meantime please keep your fingers crossed that I continue to improve with the PH symptoms and the side effects are no longer!

On a good note, my Facebook page, Tess and PH, has now reached over 1000 likes and followers! I will continue to raise awareness for this incurable heart and lung condition alongside the PHA UK charity and help people to understand this condition!

Follow my everyday updates on my Twitter @maritess_mt

Or check out my FB page Tess and PH

#nocurealwayshope #BreathlessNotVoiceless #LivingwithPH

Thanks for reading!

Relationships & Illness

Dear Readers,

One thing that is sad about battling illnesses is that relationships break.

Sudden illnesses affect yourself and those around you. People won't understand, they think you're making excuses, they just won't listen. You want to do everything you used to do before diagnosis, truth is, you can't!

Life is about making the most of it, no one knows when their time is up and sometimes if you want to save a relationship you have to move on and be the bigger person.



Struggling with an illness everyday is hard enough without the added stress of reminding yourself of what someone has done.

Illness can be a big deal breaker and sadly not all relationships are reconciled, some go too far that forgiveness is too difficult due to reasons personal to those involved.

Be the bigger person, move on, but never forget how they made you feel. Go forth and live life and enjoy your life with those who lift you up, not bring you down!




You can also follow my PH journey on Facebook - Tess & PH

PH Awareness Week 2017

Dear Readers,


PH Awareness Week = 20th - 27th November 2017



In this week I did a lot of raising awareness for Pulmonary Hypertension.



Day 1

I changed my profile picture













Day 2
Understanding what Pulmonary Hypertension is

The main symptom of PH is breathlessness. This is the symptom that people will normally notice first. Other symptoms may include dizziness, feeling faint, swelling of the feet or ankles, and chest pain (particularly during exercise).

During periods of exercise, the heart beats more quickly to get more oxygen to the muscles. At the same time, the blood vessels carrying blood to the lungs (the pulmonary arteries) expand to allow more blood through. The pulmonary arteries do this by stretching slightly. In a person with PH, the walls of the pulmonary arteries are thicker, so are less able to stretch.

In a person with PH, because the pulmonary arteries are less able to stretch, the heart has to work harder to pump blood to the lungs. If the heart has to work harder than usual over a long period of time (months or years), it begins to work less effectively. http://www.phauk.org/what-is-ph
/

Day 3 
Living with Pulmonary Hypertension


















Day 4
Treatment for Pulmonary Hypertension

There is no single test to diagnose pulmonary hypertension (PH).
Most people will have a number of tests before an accurate diagnosis of PH can be made. Many of these tests are used to find out whether there are other causes of the symptoms, or to assess if you have a condition that may be causing PH.
Some of the tests are; Cardiac Catherisation, Echocardiagram, Lung Function, MRI scans, Walk Tests and many more. Though not everyone needs all these tests, it varies with each patient.

We are very lucky to have as many treatments for PH as there are at the moment. Clinical trials play a very important role in the development of new treatments for different diseases and conditions. Without clinical trials there would have been no developments in new treatments for PH.

However for now, some of the treatments available are; Anticoagulants, Endothelin receptor antagonists (ERAs), Oxygen, Warfarin & Transplant Surgery. https://www.organdonation.nhs.uk//register-to-donate/



Day 5
Who are the PHA UK

The Pulmonary Hypertension Association (PHA UK) is the only charity in the UK dedicated to people with the rare disease, pulmonary hypertension (PH).

Set up in 2000, PHA UK has grown to a membership of over 3,500. The PH community is like no other – a unique group of people committed to supporting each other and raising awareness of this serious condition in the hope of one day, finding a cure.

• We support PH patients and their families to enjoy a better quality of life

• We work closely with healthcare professionals to improve time to diagnosis and treatment

• We lobby to ensure PH is on the political agenda

• We provide research grants to individuals, hospitals and specialist PH centres to improve the way PH is treated and managed.

• We organise our own training and provide educational grants to help healthcare professionals obtain the specialist skills required to treat people with PH

• We undertake a wide range of media activity to raise awareness of pulmonary hypertension

• We organise events for members with an emphasis on interaction, fun and education

• We provide members with an engaging quarterly magazine, encouraging them to share their own PH stories and feel part of a community

As well as supporting people living with PH, we also work to raise awareness of the condition. Pulmonary hypertension can severely affect a patient’s quality of life, but the condition is not widely understood in the UK and can often be mistaken for high blood pressure.

This is where the PHA UK comes in. We are committed to helping raise awareness of the condition among the general public, healthcare professionals, policy makers, funders, and politicians, to help improve the lives of people living with PH. http://www.phauk.org


Day 6
My 10th Anniversary PH Video






Day 7
Thank you
Thank you to everyone who has followed this year’s PH Awareness Week. Thanks for the liking, the sharing and helping to raise awareness of Pulmonary Hypertension! It means so much to people like myself, who are battling with this rare disease every day and we will always hope that one day there will be a cure!

In the meantime, this isn’t goodbye! Please continue to follow my page and my blog to follow my fight against Pulmonary Hypertension and to continue to raise awareness. There are many ways to get involved and support PH and that’s by fundraising, PH lottery, easyfundraising or donating! http://www.phauk.org/get-involved-with-the-pha-uk/

No Cure Always Hope

Please take 8 minutes to watch this video that Terry and I created to celebrate my 10th Pulmonary Hypertension Anniversary!!

Please share this link & help us to raise awareness

Thank you!






To contact Tess about PH and her video please email
tessandph@hotmail.com

Pulmonary Hypertension Awareness Week 2017


Please help those, like me, with Pulmonary Hypertension to raise awareness during the week of 20th - 27th November 2017!! 




Pulmonary hypertension is a rare, serious disease of the heart & lungs – let’s help people understand. #BreathlessNotVoiceless #PHWeek17

Click here to find out ways to get involved in #PHWeek17  



PH Awareness

Dear Readers,

Our amazing charity, PHA-UK have created a new website called PHocus2021 and this is to help raise more awareness for our invisible condition, Pulmonary Hypertension!

As part of this campaign a few PH patients travelled to Sheffield in July to take part in a video to help raise awareness.

We have spoken about what it is like to live with Pulmonary Hypertension and how it affects us in every day life. We all have PH, but we all have a different outlook on this condition and how it affects us individually.

Please take time to watch this video and to try and understand what us PH'ers go through in our daily lives.



Available for any interviews, please contact Mary Ferguson on 01226 766900 or mary@capitalbmedia.co.uk 

Music therapist Tess Jewson is 27 and lives in Chelmsford in Essex. She has been living with pulmonary hypertension for ten years.



“I was originally told my symptoms of breathlessness were down to asthma and I tried every inhaler going. No-one realised it was a symptom of pulmonary hypertension. It wasn’t until I was 17, at college, when I suffered really bad chest pains, collapsed and was taken to hospital. Tests showed a hole in my heart that hadn’t closed up had led to pulmonary hypertension.

I got diagnosed in February 2008. My 18th birthday was in the November and I was told to bring the celebrations forward, because they didn’t know what my prognosis was, only that I was really, really ill.

I didn’t have a clue what pulmonary hypertension was, I was totally lost. Would I die? To be honest, I don’t think I grieved. I just thought, I’ve got a heart condition, but I’m going to get on with my life.

Not many people know what pulmonary hypertension is. And when you do explain it to them, they think it’s just high blood pressure.

As well as it being rare, it’s also invisible, and that’s what I find tough. I have a disability badge for my car, and I get a lot of looks because when I go out I slap on the make-up so I can look my best, and not look ill.

There are times when I do think about what’s ahead of me and I feel sad. I know things will get bad, but until that time comes, I’m going to continue living the life that I’m leading and think of the now, not the future.”
SaveSave

Chronic Pain with PH

Hello Readers,

NB: This blog post is of my own opinions and experiences and must NOT be taken as generic for everyone or as medical facts or advice.

Chronic Pain - What is it? Chronic Pain is long - term pain that lasts longer than 12 weeks. The physical effects of chronic pain include, tense muscles, limited mobility, lack of energy and changes in appetite. Emotional effects include depression, anger, anxiety and fear of re-injury. This fear may hamper a person's ability to return to normal work or leisure activities (cited: http://www.webmd.boots.com/pain-management/guide/pain-basics)

As part of my heart condition, I, like many others have to deal with chronic pain.

My pain presents itself in many parts of the body, mainly the limbs, but also my entire body. The pain can be so severe that I am unable to move. I have been told the reason of my pain is due to lack of oxygen getting to my extremities. There are times where I have to curl up into a ball, as any other position or movement is agonising. This severe pain has brought me to tears, and has brought me down to feeling disillusioned.

I will never be able to cure this pain, and I control it through very strong painkillers. However, even though I take 3 tablets a day for Pulmonary Hypertension, I don't like to take my painkillers too often.

These painkillers are the strongest dose allowed for my body and so I only take them at night time, as they help me to sleep through the pain.

When the pain is so severe I go around in my wheelchair and scooter. My scooter is great and still gives me the chance to go out an enjoy the activities I have planned, like seeing my friends.

Again, chronic pain can be invisible what with the amount of medication a person can take to help ease it. This being another issue I continue to deal with. As much as I say I like having an invisible illness, when I get grief from strangers, I wish I had something to prove my illness. But why should I have to prove my illness, I wish I was healthy like the person who is being ignorant towards me at that time.

However when I have to go in my wheelchair, I feel like saying, look I am ill, I deserve this badge, but I also feel so embarrassed! Embarrassed because I feel I shouldn't have to be in this wheelchair at my age or just generally embarrassed.. is that wrong?! I suppose, I just haven't got used to the situation! I like getting back to PH being 'invisible' for me.. is that wrong? Should I feel lucky that I'm able to have a condition where some days I can be 'invisible' and others I am 'visible'? Many would answer yes, some no, but a question that I ask myself a lot!

Anyway, I know whether I'm in or out of my wheelchair, I need that badge as I can't walk far due to having an incurable heart condition, and I shouldn't waste my time having to explain it to those who don't know me! Some days I comment and others I walk on. It all depends on if I have the energies to say something. To be honest ignorant people can jog on in my life, and if they want to be rude and disrespectful, I feel sorry that they haven't anything better to do with their lives.

Things seem to have got better in that respect, since having a sticker saying 'not all disabilities are visible' - whether this has had a positive effect, I don't know, but I love having it there!


I am lucky that I am still able to work, not a proper 9-5 job, but work enough that suits my health needs, supports my life and live comfortably with my husband. I love my job and know that each day I get to help other people.

My pain never goes, but luckily many days are good compare to being bad. I will go through episodes where I will suffer with this pain for many months. However, after all this, I am stable, and I go out every day of my life and put a smile on my face and I will not let this pain or heart condition stop me from doing what I want and the things I love in life - Living Life To The Full!!


Thanks for reading!


A reminder of what is Pulmonary Hypertension (PH)

PHA UK Conference 2017

Hello Readers,

Not sure who or what PHA-UK are or do... click here to find out more! They are a small charity, but have the biggest heart - literally! They do so much for those with and who care for us PH'ers! All the money they use is from the donations of their supporters. They are not government funded, but they fight tooth and nail to support us and get the treatment we need! Please help support them and have a read of all the great things that they do - Thank you!



My husband and I attended the PHA UK conference! It was my 2nd conference and Terry's first! We both learnt a lot about my heart condition, Pulmonary Hypertension, especially Terry. However I also learnt new things about PH and hearing about future medications and technologies that will keep me and my Friends keep our hope of a future cure! Whilst we are there to learn more about our condition, it is also gives us all a chance to socialise and become friends with people who also suffer with PH. #NoCureAlwaysHope

The Pulmonary Hypertension Association UK ran such an incredible conference held at the beautiful hotel of Crowne Plaza in Oxford. They had such great speakers, who were all confident and full of knowledge in their own expertise. The seminars after the conference were great, with me and Terry trying out Tai Chi!! It was fun and a good laugh! The night ended with the gala ball, where many dressed up as Pirates! The food was delicious and with the dance floor lit up, Terry and I with many others danced the night away!

Congratulations PHA-UK for such a successful conference, and we look forward to the next one!!

Thanks for reading!













WE ARE MARRIED

Mr & Mrs Jewson

Gosfield Hall - 27th April 2017

The best day of our lives and I was well enough to walk down that aisle without any mobility help! Bring on our Honeymoon next year!





         





Hen Do

Hello Readers,

So the weekend suddenly arrived for my Hen Do! Terry had already been and returned from his Stag Do - he had an amazing time, that's all I know... Haha!

My Hen Do comprised of me and 8 of my friends and what an amazing night it was! I truly had a fantastic weekend celebrating my final days as Miss Dunn!

We got a pink limo up to London, and it dropped us off at Strada. We all enjoyed a 3 course meal and then it was time to head to the night club! We partied hard until the early hours of the morning at The Zoo Bar & Club in Leicester Square.

When our feet were hurting and we'd partied as much as we could, we had our pink limo waiting for us outside the club ready to sweep us off our feet and back to Essex!

It was definitely a night that I'll never forget, with the most amazing friends making it all so worthwhile! <3

Thanks for reading!













Homeowners

Terry and I are proud owners of our very first home!

We can't believe we've gotten on the housing ladder and we are so excited to put our own stamp on our new home! So with lots of decorating to get done, I'd better get off this blog and grab a paint brush!!



Birthday, Christmas, The Nutcracker & New Year's Eve

Hello Readers,

So I've reached another milestone of turning another year older on the 13th November. I am now 26 and as always living life to the full. I had a lovely chilled birthday and went out for a lovely meal with my mum and Terry. Only 5 months until our Wedding!!





Christmas soon came round and Terry and I had a lovely Christmas Day at his Dad's. We then stayed at my Mum's for the rest of the Christmas period and had lots of food and celebrations! All in all a great Christmas! Christmas is also a tough time for us as it was my Dad's anniversary since he passed away. My mum and I did our yearly tradition of buying a lovely wreath and placed it on his plaque. For my Mum's present, I got her tickets to see The Nutcracker at the ENO. We had a box to ourselves and the view was spectacular. The dancers were amazing and it was a truly wonderful show! I can definitely recommend seeing it, or even going again!!








As for New Year's Eve, it was the uni reunion again and Terry and I travelled to Suffolk to celebrate the final hours of 2016! As always it was a night to remember (or not for some) and full of laughs and jokes and lots of alcohol! My mates are always there for me and I couldn't ask for better friends! :)


Thanks for reading!