How your partner can support you with psoriasis — May 23, 2018

How your partner can support you with psoriasis

How your partner can support you with psoriasis

When you’ve had psoriasis for as long as I have, it almost becomes second nature, and some days you just wish it would disappear! My journey with psoriasis has been an extremely tough one with so many ups and downs. I even reached a point where I just wanted it all to end, a really dark place. I am happy to say I have it under control and am now in a much better place with it. You could say I now have a steady relationship with Pso!

The 26th year into this pso-called relationship has made me realise that I would not have coped so well had I not had the support of my husband, Diyen.

Having psoriasis from a young age always made me feel like I would never find a partner. I just didn’t believe someone would want to be with me, but how wrong I was. Meeting Diyen was a breath of fresh air and I instantly knew I was comfortable and would be able to tell him about my condition. I was right, he was so supportive and even told my parents not to worry and that he would look after me.

We have been together for 20 years and we have been on my psoriasis journey together. We said “in sickness and in health, I do” and without a doubt I have been supported all the way! A key point we found that has helped, is talking. It took me a long time to be as open and honest about how I feel and how I am coping with the condition, treatments or even the mental impact that psoriasis is having on me, but once I opened up I felt so much better and so light in myself.

Rena and Diyen supporting each other

Over the years I have noticed Diyen has been able to pick up on things without me saying anything and that’s because he has been really paying attention and understanding me in ways I may not know myself! Because we have been through so much together, we thought it may help to share our experiences with others, so Diyen has put together his top tips on how you can support your partner with psoriasis.

Diyen’s top tips on supporting your partner with psoriasis

  • Communication – always find a way to communicate that both of you are comfortable with
  • Educate yourself on the condition and treatments side effects
  • Be part of the decision making when it comes to treatments as this helps take the pressure off your partner
  • Have a catch up with you partner when they have appointments, even a simple question “How did it go?”
  • When it’s a tough day, find a distraction
  • Be confident for them and your partner will naturally bounce off your confidence too
  • Some things to take note of: sleep patterns, body language, visual contact, signs of pain and any type of change that is not normal
  • Do something together on a regular basis and during this time, no mention of psoriasis! Just have a great time
  • Encourage your partner to wear what they are happy with; don’t worry about what others think. If they are going to stare, make it worthwhile!
  • Allow your partner to have a safe place to offload if things get too much, even if it means they want to be left alone for a while
  • Understand that each day may be different and be prepared to go with the flow
  • Find a way to lighten the load with some humour and laughter, it really helps!

 

Rena and Diyen at a party

A message from Diyen

“Hi Guys,

I hope reading my top tips has helped, I still use all this on a regular basis to support Rena. As she has mentioned, this journey we are on will have good and bad days and some that just pass by with no effect.

I have always told Rena no matter what, I love you for who you are and your condition does not change anything. We have been together over 20 years and we have grown together and I realised the best way for me to support Rena was to be honest about the situation and any concerns; this approach has helped us both.

I have a much better understanding and am able to be there when she needs me, even when she was in a dark place she found a way to let me know she was not doing well. We worked together and changed things around. When she decided she wanted to tell her story and helps others, I was so proud and knew it would help her too. I recall when she never spoke about it to anyone and now she is a part of a large community of people creating awareness and supporting each other.

While you are being the supportive partner remember to be kind to yourself too, you need to find the right balance that suits you both.

I love the fact that Rena is so much more confident in what she wears as I know this really had an impact on her when she was young. She is able to put on what she wants and that’s that! On her birthday she bought a dress and was in two minds about whether to wear it – not because of her skin – but because she couldn’t decide which shoes would go with her outfit!!! She ended up wearing the dress….and she looked amazing!!”

Rena wearing the dress

Pso go and inject that spring in your partner’s step, be comfortable and confident together!

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Pso what’s been going on — March 27, 2018

Pso what’s been going on

Time fly’s when your having fun…

If only I was having fun! It’s been a long while since I have posted.

2016, what a year I had with my health! Looking back I’m shocked it was that bad.

I have spent more than half my life dealing with psoriasis, then adding Psoriatic Arthritis  and Fibromyalgia to the mix. I’m not going lie, it’s been a nightmare to cope with!

In 2016 I collapsed several times with server chest pain, short of breath and a few other symptoms. The pain I was in was extreme, it actually hit 10 and over. Every time I was asked the level of pain I was in I really wanted to scream my head off, but instead I silently just took it all in and barley made enough sound to say it was bad and over 10!

I was taken into A&E each time it happened as it looked as though I was having an heart attack! Each time dozens of tests to figure out what was going on. Everything kept coming back negative, which in itself was a positive!

So they ruled out heart attack but couldn’t figure out what was happening! The confusing part was the symptoms, they were exactly the same as of a heart attack or cardiac arrest.

As all my symptoms were causing confusion and great concern the doctors decided I needed to be tested further and in more depth than in A&E. So further investigations started and what a draining process this was. Results for my heart came back positive, my heart was fine and in a good state, but they still couldn’t understand what was causing all the episodes. So more tests were added to the equation but this time by the Lung and Respiratory Unit, another few months of endless tests. These test not so clear and straight forward. I have now been diagnosed with dysfunctional breathing, and will need to keep and eye on my lungs just to be on the safe side and keep and eye on any complications that may arise in the future!

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All the test actually took almost a year to complete, so 2017 I spent in and out of hospital and taking the time to recover. All the testing was draining and waiting for the results even more so.

I had to leave my job in 2016 because I just couldn’t cope with it all and I knew I need to figure out what was going on and more so I had to be kind to myself and rest and not push myself like I have always done.

I know things will never be straight forward with me and am at high risk of other conditions due to having auto immune disease.

I’m still not in the clear when it comes to the chest pain and do get flare ups of server pain, but I just deal with it now. The last few weeks have been tough as the pain is back in full force but I’m determine not to let it get me down!

Doctors have still not been able to pin point what is going on or what the trigger may be. Its actually at a point where they don’t know what to say to me any more! I have now requested that all the testing stop and if things get really serious ill review what I want to do then.

As 2018 started I decided I needed a fresh start and to concentrate on a balanced life style. I really just want a year where my health is not the focus and I can just breathe and be me!

So in the mean time each day as it comes because life is too short!

Psoriasis: Under The Skin — October 18, 2015
Life’s an Itch — September 4, 2015

Life’s an Itch

Does Psoriasis itch? Yes, and can be very distressing.

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So why am I talking itch? Well, many healthcare professionals believe it doesn’t and has low or no impact at all. They obviously have no idea! (I have been tempted to throw itching powder at a few of my doctors in the past who have dismissed the itch)

For me the itching can get really bad leaving me feeling exhausted and stressed out. On many occasions I have ended up scratching so hard that I have ripped my skin open, with blood every where, not to mention triggering trauma to my skin causing a flare up.

So when I was asked to take part in this fantastic campaign I was more than happy too.

Life’s an Itch  is a campaign bought together by The Psoriasis Association and Celgene, also supported by The British Dermatological Nursing Group.

“A campaign to raise awareness about the real impact of itch for people with psoriasis”

I was asked to submit words that describe what ‘Itch’ means to me, along with other Psoriasis Bloggers…and this amazing piece of art work was produced.

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Get involved with Life’s an Itch and create more art work like this!

Talking helps! — August 24, 2015

Talking helps!

The day I opened up and explained how I felt living with psoriasis and the impact it was having on my life, was the day I felt free!

Since then I decided I would do all that I could to help others. Educating society is a must, awareness is incredibly important.

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Quality Care — August 20, 2015

Quality Care

Wowsa time just seems to be flying by! I have slightly neglected my blog as I have been busy working on some exciting projects and have been meaning to tell you all about them…

Quality Care is for a platform designed by Leo Pharma to bring patients, family, friends and healthcare professionals information, advise and support.

We have all spent hours on the net sourcing valid and trust worthy information, here you can do exactly that. All the information advise and support has been thoroughly checked.

Within quality care there is the Bloggers Universe, I am a resident blogger for this section, along with three other bloggers. We write blogs ranging from topics such as food, fashion makeup and lifestyle. When I was asked to be part of this I said yes straight away!  Its an amazing opportunity to be part of such a great platform. Here is one of my blog post Keeping skin moisturised for longer

Meet the rest of the bloggers, who also have there own blogs

Jess – Jessica and psoriasis

Simon – My Skin and I

Helen – The Flaky Fashionista

                                                    

 MyPso

If your one for downloading the latest App, then make sure MyPso is your next download. The app allows you to track and make notes on your psoriasis. You can log triggers and symptoms, take photos with the option to download the data to pdf form for you to take to your appointments and have more detailed discussion. I know many times I have gone and forgotten to mention something or by the time my appointment is due the flare up has calmed down, this way you can take photos and show your doctor.

Back in June I was invited to speak about my journey with psoriasis, along with Simon at the launch event for Quality Care. Its so refreshing to see how forward things have com. Being able to have open discussions and creating awareness as well as contributing to such great platforms of support and advise. At the event we were also joined by Dr Bewley and Dr Shah who spoke about the effects psoriasis has psychologically, it was nice to see how understanding and caring they were. Putting it out there that psoriasis is not just a skin thing!

Pso it all started when I was 13 — July 9, 2015

Pso it all started when I was 13

It started when I was 13 years old, I felt small spots on my upper back and neck they were raised and red, almost like a heat rash. I showed my mum as I couldn’t really see properly; she too thought it was heat rash. Within days it speared to my elbows and knees and we knew something wasn’t right as it no longer looked like a rash.

The spots had started to pop and had a ring of dry pealing skin and it was incredibly itchy. My parents took me to see our GP straight away as it started to spread on my legs and arms. I was diagnosed almost straight away, my GP had a dermatology background and soon as she saw my skin said it was psoriasis. She did however ask another doctor to come and have a look to confirm the diagnosis. I still remember them saying “you have psoriasis, and there is no cure you have this for life!” 

I remember feeling numb and not quite understanding what they were saying, almost like I couldn’t hear what they were saying to my parents. It still haunts me to this day, hearing I have a condition that has no cure.

I was referred to a dermatologist straight away, by the time my appointment came through I was covered head to toe in psoriasis. To be honest the wait wasn’t that long, a few weeks at most.

I couldn’t understand what was going on; my skin was on fire and hurting like made not to mention how itchy it was. But I kept a lot of this to myself; I didn’t know how to express how I was feeling. Soon this way of dealing with it became normal. I put up a front and carried on like nothing was wrong!

I was a young girl when my whole body was covered in Psoriasis. One minute I was fine, happy carefree and the next it was all out of control and I bottled it all up. I became withdrawn behind closed doors, crying myself to sleep every night. Hours and hours questioning myself “what have I done wrong, why won’t this go”

At the time I didn’t realise but looking back now, I had a temper that was volcanic. I would break out in a rage and punch my bedroom walls, break glasses, my insides would ache in anger but I never let anyone see this side of me. Occasionally I slipped up and my parents would notice I was not my happy bubbly self and tried asking but I brushed it off.

One day I just couldn’t hide it from them and cried and cried, screaming and saying it hurts and I want it to go away. They were so upset to see me this way and I couldn’t handle seeing them so upset, so I decided from that day onwards I would never show them I can’t cope. But I knew it wasn’t really working I could see it in their eyes they worried. I was hurting and in pain and I wanted to protect them and just wanted them to see the daughter they knew before all this, chatterbox full of happiness and smiles.

School was really hard.  I was bullied, called names, rice krispy, pizza face things like that. My face was covered in psoriasis, not like I could hide it! For some reason it didn’t rise to it, I was too tired fighting to cope with psoriasis, and had no energy to deal with the comments.

I always feel really disappointed in my teachers; I received no support from them at all. When I started high school I was fine, then all of a sudden I’m covered; they can see, but never once did they ask if I was ok. Oh the excuses I made up not to do PE and Dance, you would have thought that this might have set off alarm bells and prompt them to find out what’s going on!

The years just seem to pass by with no signs of the psoriasis clearing. Part of me held on to hope one day I would wake up and I would have clear skin, the pain and suffering would end and I could live the rest of my life normally…that day hasn’t come!

I have server plaque psoriasis and it has never fully cleared, I have tried so many treatments, topical, light treatment, systemic, biologic and also alternative therapies like acupuncture, reflexology, diets, home remedies the list goes on, and I guess it won’t stop there….

In 24 years of having psoriasis I have only had few months here and there of almost clear skin. I have never managed to clear all of it. So far the best treatment that I have done well on is the biologic injections. Currently I am on Stelara but am at the point where I have become immune and starting to flare up again. I am having discussions with my consultant to see what available next is, fingers crossed!

My biggest fear is having a massive flare up as I am not strong as I used to be in fighting it off. My body is exhausted and it really takes it out of me.

I have come a long way from the dark days where I closed up and wouldn’t share with anyone how I feel and what it’s like to have a chronic condition. I now focus on helping others not to suffer in silence.

PSORIASIS ASSOCIATION CONFERENCE — May 14, 2015

PSORIASIS ASSOCIATION CONFERENCE

 

On Saturday 9th May 2015 Psoriasis Association held there annual conference at the beautiful Whittlebury Hall in Northamptonshire.

It was a pleasure to be invited as a guest speaker at the conference.

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I spoke about co-management of Psoriasis and Psoriatic Arthritis. Diyen my partner came along too, he filmed me speaking, and I have to say it always hits home harder when I hear myself talking about my journey. I know it’s all happening but I guess because I am living the moments every day I forget how tough things can really be sometimes. Maybe it just goes to show it is who I am and the way I deal with these chronic conditions is normal now.

But I always question “what is normal” everything is always changing and I am exhausted trying to keep up with it all.

Anyway back to the conference, this was the first one I have attended and I have to say it was very good, lots of new information and advice. Also an opportunity to meet other sufferers, share advice and experiences.

It was great to catch up with Victoria, founder of Psoriasense, we have had the pleasure working on a few projects together.

Some interesting topics were covered

  • Social media
  • Treatment decision making and psoriasis
  • What role does diet play
  • Co-management of psoriasis and psoriatic arthritis

When I was first diagnosed with P, 24 years ago information was very little and no support groups at all. It’s refreshing to see how much support there is out there now. A big thank you has to go out to those who suffer and share their stories and create awareness.

NO MORE SUFFERING IN SILENCE

Diyen knows a lot about the conditions and how hard things have been for me, he also found the information extremely beneficial. He also struggled to understand why so much is missed by consultants and why referrals are not made by GP’s, actually he was extremely annoyed! Since then he has been asking me a lot of questions, I think his making sure I have all the support I need.

If you haven’t had a chance to attend the conference I highly recommend you do! I know many of us touch base via social media and the Psoriasis Association Facebook group but meeting in person would be great. I always look forward to meeting fellow warriors!

Oh and the goodie bag is amazing, some great products to try out!

Some great samples to try
Psoriasis is not contagious, awareness is! — April 29, 2015
You think you’re having a bad hair day!! — April 17, 2015

You think you’re having a bad hair day!!

Try coping with scalp psoriasis!! I guarantee you will want to pull your hair out!!

My scalp is covered with Psoriasis at the moment and its driving me CRAZY!!!

I am so tempted to shave my hair off, I just can’t deal with the itching this time round, not to mention the snowflakes that keep falling off my head.

No chance of me getting lost or robbing a bank, I leave to much DNA evidence hahaha!!!

I am due a Stelara injection in a few weeks, couldn’t come faster I need my fix!!

Flare up started a few weeks ago and my scalp is ooouuuuccchhhhhhhh, you get my drift its hurting a tad! My usual treatments are not working at all this time round, but I’m still trying to calm it down. Cocoasis and Dovobet gel please please do your thing and help my head!

Guess it’s time to rock some hats until I stop snowing 😛

On a positive note here’s me having fabulous hair days!!!!!

Rena Phone Nov 13 403  Rena phone july 2013 035 rena may 21 365