Getting My Mojo Back

Good Day Everyone,

I hope you've all had a great start to 2016. I am pleased to say that I am finally starting to feel like myself again. In fact, I feel like I'm getting my mojo back :o).

The last couple of months of 2015 were very difficult. My arthritis flared up severely and there were days where I felt like I couldn't carry on living with the excruciating pain I was experiencing. In addition, both my scalp and body psoriasis were also flaring and I was suffering from more migraines than usual, all whilst living in what felt like a building site! The despair that I felt at the end of 2015 was reminiscent of the despair I felt back at the end of 2011, when I made the difficult decision to give up my career so that I could work on my health full time. I felt like I was living under a dark grey cloud surrounded by a thick fog - I couldn't see where I was going, there was no shining light in the distance, and I could feel myself heading into a downward spiral of depression. If you've read my previous blog post (read here), you'll know that I slowly but surely started to take positive steps to move forward during the last few days of 2015.

Juicing again :o)

Over the past few weeks I have continued to make good progress with small positive changes to my daily life. I am now in a place where I'm starting to feel happy about my life again. My health is starting to improve and whilst I am still struggling with my arthritic shoulder, I have seen small improvements. I feel like I now have a better understanding of what I need to do to help my shoulder get better and accepting that it is going to be a long slow battle is easing my frustration.

Having a fully functioning kitchen has been a huge contributor to me getting my mojo back. I always feel better when I have greater control over what I eat, as I know from experience that what I eat greatly affects my arthritis. Living in a caravan for six months with a restrictive kitchen meant that we were eating foods that didn't take long to cook as the cooker wasn't particularly powerful, and foods that were convenient to store as we had a very small refrigerator. Basically, we lived of a lot of processed carbs like pasta and bread. We were eating some fruit and vegetables, but it wasn't as much as we would typically eat, and there were a few too many treats. My hubby is a sugar junkie and would often snack on chocolates and biscuits, whilst I relapsed on my crisp addiction (although to be fair, I think I was comfort eating as I was unhappy with my whole living in a caravan situation). Whilst hubby would burn of the calories from his vice due to all the physical work he was doing, I on the other hand, developed a rather rounded midsection due to my sedentary lifestyle ;o). However, all that is now changing. We have a fully equipped kitchen and a dining table with chairs, which means that we actually have something to sit on, other than our bed, and that has made the world of difference.

 Below are some of the steps that I have taken over the past few weeks that have resulted in me getting my mojo back;

• Exercising daily: I have made a conscious effort to get back into the routine of exercising daily. Exercising really helps with my arthritic pain and joint stiffness which in turn helps my mobility. Some days I will go for a brisk 40min sea front walk, other days I'll hula hoop or do yoga based stretching exercises at home if I'm too tired for a walk or if it's raining (which it has been a lot!).
• Baths: One of the side effects of suffering from chronic pain is insomnia so I am trying really hard to take regular bath soaks in the evenings to help me sleep better and help with my joint pain.
• Bedtime: To help with my insomnia, I am trying to go to bed at the same time every night and get up at the same time every morning, even on weekends, so that I can condition my body and mind into a sleep routine.
• Food: Now that we have a functioning kitchen, I am cooking from scratch and we are eating healthy, nutritious food again which makes me incredibly happy, oh and there are no crisps in the house! Breakfast toast is now replaced with smoothie bowls and we juice most days so I get a good chunk of anti-inflammatory ginger into my overly inflamed body.
• Cooking in bulk: Because I never know how bad my body is going to be from one day to the next, I have started to cook in bulk. I will often cook enough food to last us for two days and if it's freezable I will make enough so that a couple of batches can go in the freezer. This way there is healthy home cooked food in the fridge / freezer so that we don't resort to ready meals / takeaways. Plus, it means I don't have to cook every single day, meaning I can use that energy to write blog posts like this one :o).
• Medication application: To deal with my flaring scalp psoriasis I have resorted back to a routine of applying my scalp medication daily (read more here). This means having to wash my hair every single day which is an incredibly exhausting task when you suffer from chronic fatigue and exhaustion, but I am seeing such great improvements that it's keeping me motivated to continue. Hopefully, soon my hair will no longer look like someone has emptied a snow globe on it and I can temper the medication application down to just a couple of times a week. I am also doing the same with my body psoriasis.
• Drinking more: To help with my migraines I am making a conscious effort to drink more water. Aside from food / scent triggers, I know that being dehydrated can cause me to experience more migraines and lets just say that having to use a caravan toilet for six months wasn't the greatest incentive to drink more!
• Silence: This is slightly more on the meditative side but I am consciously taking time out of my day to simply be in silence. I sit without the radio or laptop on (we have no television and you can find out why here) and just listen. It is incredibly calming. Being surrounded by trees and public gardens mean we get a lot of birds around our house, especially at the back and sometimes I just stand and listen to / watch them. We also have squirrels at the back of our house and they are always fun to watch.
• Acceptance: I am actively accepting the things that I cannot change and learning to let go of the negative emotions they cause me to feel. One half of our house still looks like a building site and walking through it used to really upset me. The other half, whilst it's progressed significantly, it still isn't finished and not having a single room that is finished really grated on me, but no more. I have accepted that this house renovation is taking a lot longer than we ever anticipated and being upset about it doesn't actually change the situation. There's no point in wasting valuable energy in being upset. I just have to ride it out whilst appreciating all the things that are working, like the kitchen and having a regular toilet and bath. I am also accepting that getting my health back on track is going to be a long journey, but at least I am moving in the right direction now. 

Over the years that I've lived with Arthur (aka arthritis), I've been forced to learn (and accept) that things are just going to go at a much, much slower pace for me, compared to others. Having a mind that is fully functional, but a body that is not, causes a great deal of internal conflict and frustration. I have so many ideas of blog posts that I want to write, content that I'd like to create for my YouTube channel and photographs that I want to take, but alas I barely have enough energy to shower and cook most days. My life now is so different to before Arthur invaded my body. I often reminisce of when I used to have a career that led me to travel the world (well Europe and the US), work crazy hours and always be on the go socially. My world has shrunk so much, as has my identity, but nonetheless, I have learnt to treasure the days when I can cook and shower for I have experienced days when I haven't even been able to do that. Having an attitude of gratitude (and acceptance) is definitely key in learning to be happy whilst being chronically ill.


Love Sheen xxx

Why Today Had To Be Different

Good Day Everyone,

It sure has been a while since I sat down to write a blog post. The past few weeks have been incredibly tough, primarily on the health front, although the house renovation has been another source of stress, and therefore a contributory factor to the aforementioned. I'll do a separate blog post updating you on the house soon as a lot has happened, and not always in a good way!

Coming back to the health issues, I've been firing or rather flaring, from all cylinders. I've been experiencing more migraine attacks than usual, and my body and scalp psoriasis has been going crazy. On top of this, my arthritis has flared up quite badly and I've been struggling with severe shoulder pain, as well as intense fatigue and exhaustion, despite doing very little physically. Things got really bad a couple of weeks ago and after several days of wallowing in teary self pity of "Why? Why is this happening to me?" I realised that I actually knew the answer to why, but more importantly, I took the mental step of acknowledging that no-one could put this right other than me (even though I already knew this too). You see, the thing with chronic illnesses is that you are battling those illnesses every single day, in fact it's every single minute of every single hour of every single day. The battle is continuous - there are no breaks, and it is absolutely relentless! With hindsight and some reflection (after all what else was I going to do when I'm in bed day after day), I can now see that I simply got tired of battling. I had no more fight left in me. I had surrendered, not only to the disease demons, but also to the temptations around me, which I fight on a daily basis.

So with the realisation and acknowledgement that I, and only I, had the power to change things, I...  started to change things ;o). Initially, the changes were all in my head as my body physically wasn't well enough to do anything, but over the last few days, I have started to turn those mental changes into physical action. They started of small, like me taking over juicing duties from hubby or being well enough to accompany him on a supermarket shop, but hey a step in the right direction is a step in the right direction, no matter how small, and slowly I'm moving on to bigger achievements.

Having been stuck in a bit of a negativity rut towards the end of this year, I didn't want to start 2016 on a negative note, no matter how bad my health maybe. And this is why I woke up today after a relatively decent night's sleep with a view that today had to be different. It just had to. I didn't want today, the last day of 2015, to be like the past few weeks. The same mundane routine. There had to be something new and there had to be some sense of achievement, no matter how small.

So the first thing I did was to check the weather forecast as it has been raining almost every single day this month and seeing that rain wasn't forecasted for a couple of hours, I suggested a sea front walk to hubby. We used to do these walks most mornings in Japan and found them to be very therapeutic mentally, as well as physically. Despite living next to the sea we haven't actually done many sea walks as hubby starts to work on the house as soon as he is up in the mornings. There was something very inspiring and awakening about today's walk- I started to feel like a weight was being lifted off my shoulders as I took in the crisp morning air and marveled at nature's beauty. The walk turned into a little breakfast stop off, and hubby and I used this rare quality time (we've had a great quantity of time together these past few months but it hasn't been of good quality) to reflect upon 2015, and discuss what we would both like to get out of 2016. Walking back we did get caught in the rain but it was worth it.

Once back home I took my first ever bath in our new bath tub to help my sore joints and whilst it only made them feel a little better and only for a short period of time, I think bath soaks will start to help the more often I do them. After my soak I made our daily juice and then set to work on doing some cooking. We very recently got to a stage where we have a fully functioning kitchen and yesterday hubby got our dining table and chairs out. This has made such a huge difference to the quality of our lives. So even though I was feeling quite tired physically, I decided to push ahead using my mental energy which was buzzing after the walk and bath, to be productive in the kitchen. I made fish pie, for the first time ever. I even made my own butter and parsley sauce, and it tasted great (even if I do say so myself ;o)). I made a batch of them so some can go in the freezer, and I'll be taking a few to my mum's this weekend as she's recovering from knee surgery (cue good daughter points lol).

I did a few more things that I won't bore you with but suffice to say, as I sit here typing this at 10.30pm on new year's eve, that today has been different to all the other days I've had lately. I have felt positive and got a real sense of achievement with today. Even though tonight is a quiet night for us, I feel excited, inspired and ready for 2016 to be a year of positive change for hubby and I. And on that note I shall leave you. All that remains for me to say is, thank you from the bottom of my heart for reading this and all the support you have given me, and I hope 2016 is a fabulous year for you and your loved ones :o).

Happy New Year Everyone! 

Love Sheen xxx

Psoriatic Arthritis: Second Time Acupuncture, Cupping & Moxibustion

Good Day Everyone,

Last Friday I went for my second session with my Japanese therapist for some more complementary medicine/therapies. I could not believe the difference the first session had made to my left shoulder. A week later and that shoulder was still feeling great. There was barely any tension or tightness. I've also found that I sleep really well on a Friday night after my sessions.

In last week's session the therapist started by asking me how I was feeling, specifically with regards to my problematic left shoulder. I informed her of the huge, positive, difference the first session had made to my left shoulder and explained that I was struggling with the pain in my right shoulder and collar bone joint. Also the arthritis in my right wrist and thumb was particularly active.

Acupuncture needle in my foot

She started this second session, very much like the first one, with me lying on the massage bed facing up and her examining my stomach and then poking it in several places with an acupuncture needle. She then examined the rest of my body in detail and focussed a lot on my spine. After this I spent the next hour or so face down as she did acupuncture on various parts of my body including my head, neck, shoulders, and ankles. She did focus more on my right shoulder given that that was my problematic area currently. I apologies in advance for the quality of the photos as they were taking using a phone rather than my camera.

Acupuncture needle in my head

Like the previous week, she used Moxa patches on my ankles.  In the photo below you can see the Moxa patch on my ankle burning away. As the stub burns further down, the metal part of the base/patch does get quite hot so if the therapist hasn't taken it off by that stage then I'll usually say 'hot' in Japanese and she'll immediately remove it. She also uses a 'cigarette' version of the Moxa patch and sort of pushes the warm ash into certain places on my back after she's pierced it with an acupuncture needle.

You can listen to my experience of my second session in the video below as well as how it left me feeling afterwards and again three days post-session. In the video I also talk about my first ever experience of the wet cupping (also known as blood letting) that the therapist did on the back of my neck.

As she wrapped up the session the therapist stuck these acupuncture plasters on various parts of my body. As you can see from the photo below, the plaster has a raised nodule in the centre and inside it is a very fine, short acupuncture needle.

Single needle acupuncture plaster

I removed these acupuncture plasters a few days later and I tried to capture a photo of the needle at the center just to show you what it looks like. You'll have to excuse all the fluff that's on the sticky part of the plaster in the photo below.

In case you are wondering, my sessions typically last around 80-90mins. The first one cost 8,950 Yen and all subsequent sessions cost 6,700 Yen, which is actually cheaper than a massage.

I'll be honest, I am struggling to fully understand how exactly these therapies are working and you may think that there is an element of the placebo effect, but I am actually feeling a reduction in not only the tightness in my muscles and joints, but also a reduction in my pain, and there's no mistaking when I'm in pain. The way I look at it is that at least there are no real side effects to these therapies unlike modern pharmaceutical drugs and even if I don't understand how they are working, I will continue to explore these therapies for as long as they are having a beneficial effect. I only wish I'd started to explore them a few years earlier, but hey, you live and learn ;o)

Have you ever tried acupuncture or any other complementary therapies? What was your experience?

Love Sheen xxx

Psoriatic Arthritis: First Time Acupuncture, Cupping & Moxibustion

Good Day Everyone,

If you've read my previous post then you'll know that I've had a very tough and painful few weeks with my recent arthritic flare. I cannot put into words the fatigue and exhaustion I have felt lately, not to mention the excruciating pain, sleep deprivation and breathing difficulties. Arthritis is sooo much more than a few aches and pains!

In my desperation to manage this flare I dramatically upped my pain medication...it did nothing! I went for three massages in one week in the hope that they would alleviate my spinal and shoulder pain but again this was unsuccessful.

Acupuncture needles in my hands

So I finally bit the bullet and decided that nothing could be worse than the pain Arthur (aka arthritis) has been causing me, not even the pain (or fear rather) of needles and started to explore complementary medicine, namely acupuncture and cupping.

In this video, I talk about my first ever experience of not only acupuncture and cupping but also something call moxibustion. In a bid to save my arthritic fingers from unnecessary typing I wont repeat what I discuss in the video but I'll leave a few links down below to where you can find more information about these three therapies, in case you're interested in them.

Oh and by the way, in case you were wondering... I cannot believe HOW MUCH BETTER I feel after just one session and I'm now KICKING myself for letting my phobia of needles and pain get in the way of trying these therapies sooner! But at least I seem to be turning a corner and finally feeling human again :o).

Love Sheen xxx

More about acupuncture here
More about cupping here
More about moxibustion here
Watch moxibustion in action here

This Too Shall Pass

Good Day Everyone,

For the last few weeks I have been struggling more than usual with Arthur (aka arthritis). I don't know what's made him so angry that he's flared up this badly, but I do know that he's not happy and he's not shy in letting me know. One of the hardest things about living with this autoimmune disease is not knowing what my trigger is. If I knew what was causing my body to react in this manner then I could work to reduce, ideally eliminate it. As with most autoimmune diseases, the trigger could be anything from a chemical that I am exposed to which could be in my makeup, toiletries, food or environment to a genetic component or even stress... there is simply no knowing. And that is one of the most frustrating things.

The pain in my neck/spine, shoulders, collar bones and hip joints is driving me crazy. It leads to many sleepless nights and living with chronic pain is sooo much more difficult when you're constantly sleep deprived. Seriously, when I've had a decent night's sleep I'm like Mary Poppins on Pro Plus, the high is so great that I feel like I could conquer the world (even if in reality I'm still in bed by 8pm ;o)). The difference in my mood and personality is profound...just ask my hubby.

Its no wonder that people living with chronic pain and disease are more likely to suffer from depression. I know from experience how easy it is to fall into a downward spiral of depression, negative thoughts and self sabotage. The battle is not only physical but mental too. There's this little voice inside my head that questions the value of every good, yet difficult, thing that I do when doing it hasn't stopped this disease from progressing! It hurts to exercise but I need to exercise daily to maintain my mobility and flexibility because if I don't, my joints start to seize up and my movement becomes restricted even further. It takes an awful lot of mental strength and will power not to give into that voice and just spend my days lounging on the sofa in my pjs. It also takes a lot of (mental & physical) energy to be positive and happy when I'm in such severe pain.

Chronic ill health is like a full time job and more. I have to work at it constantly, every single day of the week. So even though I'm in pain and particularly fed up at the moment, I still work hard to eat as cleanly as possible, I still try to exercise daily, and I still try to actively manage my mental health. A positive mindset has a huge effect on one's physical health, and vice versa. I don't do all of this to make Arthur better, (although I live in hope), rather I do it to not make myself worse, to avoid that downward spiral that I feel is always calling my name.

Hope is something that I will never give up. After spending a decade of my life living with the most awful scalp psoriasis, fearing I'd never know what it is like to have a normal scalp again. Feeling complete and utter despair at having to spend hours each day treating and managing this affliction, I now have a scalp that is 95% clear. It took 10 years but I finally got there and that is why I will never give up hope... some things that we want so desperately do come to us, it just takes a while!

As well as hope and prayers, I also have certain motos/mantras that I remind myself of when going through a tough time such as the title of this blog post. I know from experience that bad times will pass, I just have to be patient. Time doesn't stand still for anyone so if things are bad, never give up hope because they will change... time will bring that change. Likewise, if things are good then treasure and value them because it could all change in the blink of an eye.

So in a bid to keep my sanity through this bad patch, I've been getting up each morning and going for a walk along the seafront. This not only forms part of my daily exercise but I find being outdoors very therapeutic. Seeing the morning sun glistening on the water with the birds chirping in the background is very calming. Everyday I notice different trees budding, new flowers blooming and that gets me excited for spring, it gets me excited for the change that I know is around the corner, it gets me excited for when I will feel better :o).

Love Sheen xxx

Nature's Rubies

Good Day Everyone,

I love fruit. I've always loved fruit and pomegranate has to be one of my all time favourite fruits along with strawberries, raspberries, mango, watermelon and guava...etc etc. See, I told you I loved fruit. I would struggle to tell you which is my favourite fruit as for me, it's impossible to choose just one. 

Living in Singapore was an absolute joy for me as not only did I have easy access to all sorts of exotic fruits but it was also pretty affordable. In Japan, this is simply not the case. For some reason fruit is ridiculously expensive here (as is everything else lol) and the variety is also quite limited.  However, one fruit that I've always seen at the supermarket since moving here almost 6 months ago, is pomegranate. Whilst we have pomegranates back home in England and in Singapore, I'll be honest, like many people I would often neglect this super fruit simply because of the effort required to get to those juicy little seeds inside. Especially with my arthritic hands and issues with grip, using a sharp knife to cut into it would often mean risking my fingers ;o).

In Japan, we've invested in a couple of Japanese knives, after ours were confiscated from our shipping boxes by customs for some reason, and that has made things a whole lot easier when it comes to cutting up this amazing fruit. Japanese knives are fantastic! They're super light weight which is great for my arthritic wrist but also very sharp making it easy to cut through the toughest of fruits and vegetables. Don't get me wrong, my kitchen still looks like a murder scene by the time I've finished getting all the seeds out of the tough pomegranate skin. The kitchen cupboards and kettle look like they've been in some kind of blood bath and even the next day I find signs of the battle that took place but when you look at the sheer goodness these nature's rubies provide, it is sooo worth the effort ;o).

Pomegranate is known as a super fruit because it is rich in antioxidants. In fact, it is thought that pomegranate has greater antioxidant power than green tea or cranberries. Antioxidants are needed by our body to mop up free radicals that can cause ill health. There is compelling research to suggest that pomegranate actually offers protection against cancer and heart disease, as well as lowering cholesterol and blood pressure. You can read more about the health benefits and results from clinical trials here.

With all these great health benefits and it's easy availability, pomegranate is now a staple fruit in my diet, and with my new knife, getting to those juicy seeds is a little bit easier :o). I know that some people chew the pomegranate seeds to suck out the juice and then spit out the hard part of the seeds that's left behind, but I actually eat all of it, as the hard part of the seed is full of fiber. Pomegranates are very versatile and can be eaten in a number of different ways. I like to eat them sprinkled on salads or my breakfast smoothie bowls, added to porridge or even on their own as a snack. I remember that whenever I visited Turkey on holiday there would be freshly squeezed pomegranate juice available on most streets and it tasted unbelievably delicious.

Have you tried pomegranate juice? What's your favourite fruit?

Love Sheen xxx

Recipe: Easy Tuna Fish Cakes With A Twist

Good Day Everyone,

Many people use the new year as an opportunity to kick start their healthy eating, after indulging in the Christmas festivities. Today, I have a very easy tuna fish cake recipe for you with a little twist. I usually have most of the required ingredients sat at home, as they're pretty much staples in our kitchen. So if I'm ever stuck on what to make hubby for supper, this is something that I can turn to with ease.

Ingredients: Fish Cake

The basic ingredients for the mixture

4 medium sized potatoes
1 can of tuna fish
3 spring onions
1 lemon
Few parsley sprigs
Salt & pepper

Optional Ingredients:
75gr grated cheddar cheese
Chilli flakes
Mustard
1/2 tspn turmeric powder

Coating Ingredients:
2 slices of slightly stale bread
1-2 eggs
1 tbsp olive oil for shallow frying 

Instructions:
1. Peel, wash, slice, and boil the potatoes until cooked through.
2. In the meantime, wash and thinly slice the spring onions and parsley, and put to one side.
3. Grate the zest of the lemon and add to the spring onions and parsley.
4. Once the potatoes are cooked, drain the water and put the potatoes into a mixing bowl.
5. Squeeze the juice of half a lemon on top of the potatoes and mash them roughly (lumps are allowed ;o)).
6. To the mashed potatoes add the spring onions, parsley, lemon zest, tuna, and salt and pepper to taste.
7. You can leave the fish cake mixture as is at this stage, or you can choose to add whichever of the optional ingredients you desire. I chose to add the grated cheese and some chill flakes on this particular day. I have, in the past, added turmeric (a great anti-inflammatory for arthritis sufferers like me), and it wasn't over powering, nor did it turn the fish cakes bright yellow, in case you were wondering ;o).
8. Now it's time to roll your sleeves up and get stuck in to mix all the ingredients together. I always wear some plastic food gloves to do this.

Time to get mixing

9. Take a bit of the mixture into your hands and roll it into a ball and then flatten and pop onto a large plate/tray.
10. Repeat until you have completely used up the mixture to make the fish cakes. I typically get 8 fish cakes from this quantity of ingredients. At this stage you can store the fish cakes in the fridge until you are ready to cook them. You can also freeze the fish cakes at this stage to use at a later date. Just be sure to defrost them fully before going ahead with the coating and frying them.

11. Blitz the bread slices in a blender to form breadcrumbs and pour into a breakfast bowl.
12. Whisk the eggs in a bowl.
13. Heat up a non stick frying pan with the tablespoon of olive oil.
14. Take a fish cake and dip it into the egg, then straight into the breadcrumbs before putting it into the frying pan. Repeat for however many fish cakes fit into your frying pan at one time. I can get 4 fish cakes in my frying pan.
15. Cook the fish cakes on a medium heat for about 3 minutes on each side, until golden brown.
16. Repeat the above 2 steps for the remaining fish cakes and serve with some fresh lemon.

In the summer, we usually have our fish cakes with a colourful salad, but as it's currently winter, we ate ours with some vegetable ribbons lightly cooked in olive oil and a drop of balsamic vinegar.

 

I hope you try this recipe out and don't let the number of instructions put you off. It is a lot easier than it looks, and best of all they taste delicious :o)

Love Sheen xxx

Finally Feeling Fine

Good Day Everyone,  

Well it certainly had been a while, hasn’t it? I hope you’ve all been keeping well. As some of you may know, I have been quite ill ever since we returned from Japan in April. What I thought was an episode of my usual post-travel arthritic fatigue and exhaustion turned out to be dangerously low levels of haemoglobin. Haemoglobin is the protein in red bloods cells that transports oxygen around the body and therefore vital for the body to function normally. After several weeks of exhaustion followed by the onset of pretty severe hair loss it transpired that I had a haemoglobin level of 5.8 (normal for women is about 11.5-16). To put this figure into context, doctors typically initiate a blood transfusion when levels drop to 8-7 so 5.8 was seriously low. According to the doctor at levels of 5.8 I was in real danger of collapsing or having a heart attack which is why I ended up in hospital at the end of May. 

After a brief stay in hospital where I had a blood and an IV iron infusion I was starting to feel better. Then tests in June revealed that I had a benign (non-cancerous) growth which partly contributed to my anaemia. As the growth was quite large (about the size of an apple) I ended up having surgery recently to have it removed which meant another stay in hospital. 

I’m now recovering at home and I have to say, despite being bandaged up and not very mobile, this is the best I have felt in months. It feels so good to be back at home and be able to do simple everyday tasks because prior to the blood transfusion I had become sooo weak that I couldn’t even feed myself...scary! I’m now taking iron supplements and my haemoglobin is up to 11.8 which is finally in the normal range. My hair loss also seems to have eased somewhat and I can see lots of little hairs, about an inch long, sprouting all over my scalp. I’m hoping over time, as I get healthier, my hair will grow and thicken as it has thinned considerately and having scalp psoriasis for most of my adult life hasn't helped :o( 

So now that I have more energy, I am finally getting round to sorting through our Japan photos and I’ll be sharing our Japan experience via a series of blog posts called Japan Journals over the course of the next few weeks. I also have lots of exciting posts about Singapore and Malaysia from when my friend came to stay in May and no doubt there will be some makeup and beauty related posts coming your way too so stay tuned ;o)

Finally, I couldn’t end this blog post without saying a massive thank you to all the staff at the hospitals that did such a great job of treating me, people that donate blood and save lives, my amazing hubby for taking such good care of me over the past few months, our friends both in Singapore and back home in England that have been sooo supportive and caring, and everyone that has prayed for me, sent me positive thoughts and virtual hugs :o) You all helped immensely in keeping my spirits up. I am looking forward to the future now and getting some kind of normality back in my life as well as regular blog posts coming your way :o)

Love Sheen xxx

Living With PsA: The Drugs, The Side Effects And That Photo

Good Day Everyone,

 A quick disclaimer to say that I am not a medical professional and that you should not make any changes to your psoriatic arthritis medication and/or treatment without discussing it with your doctor first.  This is simply my personal experience of living with psoriatic arthritis.

Today I wanted to continue from last week’s post and talk about living with psoriatic arthritis (PsA) but this time focussing on my experience with the different medications I’ve tried. As I mentioned in last week’s post my rheumatologist back home in England started me on a steroid called prednisolone whilst we waited for my first set of blood test results. By the time I went back to see him to get my results I had started to suffer from quite bad insomnia as a side effect of the steroid and so my rheumatologist reduced my steroid dose and started me on a drug called Arcoxia (etoricoxib) to help with the pain and inflammation.

I remained on this combination of medicines for around 18 months and for the last eight of these months we were living in Singapore which is where we currently live (we moved over in May 2011). However, even though I was on a lower dose of the steroid, over the course of the 18 months I developed the classic side effects associated with prolonged use of steroids such as weight gain on my face and stomach. I’ve always been a slim person and I always thought that I would be able to deal with any weight gain as a result of my medication with confidence and dignity, if it was helping my arthritis... boy was I wrong!

Being only 4ft 11inches tall, any weight gain is very obvious on me. Also, I’ve always had an oval shaped face with no real cheek bone or jawline definition but the puffiness in my face due to the steroid was taking it to a whole other level. My face looked like a balloon. My cheeks became so huge that they were drowning my otherwise large nose and I had gained the most enormous double chin. My stomach just kept getting bigger and bigger even though I’m a relatively healthy eater. As I moved up in clothes size the weight gain really started to take a toll on my confidence and self-esteem. I hated looking in the mirror or shopping for clothes which I had to do as I got bigger, but worst of all I didn’t feel that this drug combination was helping with my arthritis. Yes it made the pain more manageable and helped with the inflammation but the arthritis was still progressing to more joints. It looked as though the time was coming for me to move on to a DMARD (disease modifying anti-rheumatic drug). 

For the last seven months of 2011, I was working in a temporary role as we settled into life in Singapore. I had almost an hour commute each way to work and worked quite long hours. The long hours and the commute started to take a toll on my joints. Not only that, but as my hubby also worked long hours we would often get home after 8pm and then be too tired to cook / prepare supper. As a result we were either eating foods that I wouldn’t really classify as a proper meal like fruit, cereal, bread or we were eating frozen foods that we could bung in the oven. 

As well as the arthritis, I was suffering from regular migraines which I suspect were due to the lifestyle of working long hours, always being tired and not eating as regularly or as healthily as I should. The migraines would often occur behind one of my eyes and would actually affect how much my eye opened. It was one weekend in November 2011, when we were out having a coffee and my hubby sat opposite me that he noticed how bad my eye was. There was a very obvious difference in how much less the migraine affected eye was opening compared to the eye that didn’t usually get a migraine behind it. My hubby took a photo of me on my iphone to show me. That photo shocked me and was the catalyst to the subsequent changes that I made to my life. Not only did the photo highlight the difference in my eyes, it also captured my steroid induced weight gain but more than either of those, the photo captured a despair and unhappiness that was so apparent in my face and body language. I could tell from that photo that I was truly unhappy and lacking in confidence, self-esteem and my usual happiness. There and then I decided that I could not carry on being so unhappy and that I was going to take control of my health and my life.

The first change I made was to give up work in December 2011. It wasn’t an easy decision as it meant that our household income dropped dramatically and Singapore is an expensive place to live but my hubby totally supported me and insisted that I take time out to concentrate on me. The second big decision I made was to come off the steroid medication as my gut feel was that it was no longer helping to manage my arthritis. Plus if I was going to move onto a DMARD, the next level of medication for my arthritis, then I wanted to be in a better state of mind and the weight gain was really depressing me. I weaned myself off the steroids gradually as it isn’t recommended that you stop them suddenly. 

By the time I was completely off the steroids in February 2012 I had already lost 5kg (11lbs) and that was without exercising and just eating a bit more healthily. Not working meant that my hubby and I were eating more fresh home cooked foods rather than convenience or processed foods. Around April 2012, after lots of research into the types of exercises that might help manage arthritis, I started to exercise on a regular basis. It wasn’t anything intense as I couldn’t run due to the arthritis in my knee and toes, and I couldn’t do the bike due to the arthritis in my hips. I started with just walking 3km on the treadmill, doing a few free weights. Before long, I started to feel good. I felt happier within myself as the weight came off (in total I lost 10kg (22lbs)) and I saw improvements in the time it took me to walk the 3km. When I first started in the gym, it was taking me almost 45mins just to walk 3km but after about six months of perseverance it was taking me less than 25mins. I bought a yoga mat and started to do some yoga inspired stretches which really helped with the joint pain in my larger joints like my hips and spine. I also started hula hooping which I absolutely love and luckily I had brought my hoop with me to Singapore.

By the time my mum and brother came to visit us in July 2012, I was back to my old happy self. I had gotten into a good routine of exercising daily Mon-Fri, always walking my 3km on the treadmill followed by some free weights and then either yoga inspired stretching or hula hooping. On the weekends, I wouldn’t go to the gym but instead go for walks with my hubby. I cannot tell you what a huge difference the exercise and healthy eating made. I felt so good. Life was good.

However, despite all the good of the exercise and healthy eating, the arthritis continued to spread to more joints, albeit at a slower rate. Early in 2013 I had a couple of really bad episodes of such severe fatigue that it left me bed bound. I didn’t even have the energy or strength to shower or cook on some days. It didn’t seem to matter how much I rested, the fatigue would just not ease and lasted 2-3 weeks at a time which meant I couldn’t even exercise or go out. So in April 2013, I decided it was about time I found myself a rheumatologist in Singapore. Since our move to Singapore in May 2011, I had simply been going to see a local GP (family doctor) to get repeat prescriptions of my steroid and / or Arcoxia. 

At the end of April I went to see a rheumatologist in Singapore. He took my medical history, conducted blood tests to check my inflammation levels and x-rayed all of my joints to look for joint damage. The results showed that my inflammation levels were quite high and he recommended that I start taking a DMARD in an attempt to slow the progression of my arthritis. He suggested one of the newer types of DMARDs known as anti-TNFs (anti-tumour necrosis factor) and I can’t say that I was surprised that he recommended one of the newer ones because they are a lot more expensive than the older ones. The reason I am highlighting this is because the healthcare system in Singapore is very different to the UK. In the UK, the doctor would typically write a drug prescription which a pharmacist would then dispense. In Singapore, however, most doctors dispense the medication themselves so naturally the more they dispense or the more expensive drugs they dispense the more money they make, I assume. It’s very common in Singapore to go see a doctor about a sore throat or a cough and walk away with half a dozen different drugs, each for a slightly different symptom!

Now you may think that I’m being cynical but whilst I’m not a qualified healthcare professional, I did spend many years working in the healthcare and pharmaceutical industry where I learnt about different drugs and diseases, including anti-TNFs and arthritis. I know that if I was in the UK, the guidelines would stipulate that the doctor should put me on one of the older DMARDs first before moving onto one of the newer ones. However, this may well be to try and control costs as the newer DMARDs cost thousands of pounds a month. In Singapore, we would be paying for my treatment directly out of our own pockets and so from a healthcare system perspective cost is no issue.

But cost was an issue for us especially with me not working. You see as well as the expense, the newer DMARDs can take up to three months to have an effect so we could fork out thousands of pounds only to find that the drug has had no positive effect on my arthritis and then we would have to go to the expense of trying another. Also the newer DMARDs are administered either as an IV drip or as intramuscular injections and I am severely needle phobic. In addition, the newer DMARDs have some very serious side effects such as cancer and organ damage which means you need to have a whole host of tests on a regular basis to check for these side effects. Some of these side effects can even be fatal. 

After some deliberation, I decided to try one of the older DMARDs because it was an oral tablet, it had been around longer than the newer DMARDs and so its long term side effects were well documented and it was much cheaper than the newer DMARDs. I had the choice between methotrexate (a chemotherapy drug that is also an abortive agent) or sulfasalazine (an anti-inflammatory drug developed to treat arthritis). I opted for the latter because the drug itself and the side effects seemed less scary.

Here’s another thing about healthcare in Singapore that’s different to the UK, in the UK all prescription drugs come in their original boxes along with a patient information leaflet but in Singapore most drugs are given to you as a blister pack in a clear plastic bag without the original packaging and without a patient information leaflet – to me that is seriously scary because not once has a doctor in Singapore ever explained to me or highlighted what the side effects might be for any of the drugs that I’ve been given, and without a patient information leaflet, it basically comes down to the patient to take the initiative to research the drug they've been given on the internet!

When I started on the sulfasalazine in May 2012, the rheumatologists didn’t give me a patient information leaflet nor did the drug come in the original packaging. I was given either two or three weeks’ worth of the drug as tablets in blister packs in a clear plastic bag. The rheumatologist didn’t highlight any side effects that I might suffer from at all and simply said to call his office if I had any questions. That was it!

What followed over the next two to three weeks was absolutely awful. Within a couple of days of starting on the sulfasalazine I started to suffer from daily chronic headaches, my urine was bright yellow which is a relatively painless side effect, I had a huge loss of appetite and bad stomach pains. All these side effects made me feel so much worse than my arthritis did but I persevered in the hope that as my body got used to the drug, they would ease. To make matters worse, sulfasalazine needs to be taken after food because otherwise it irritates the stomach but because I was suffering from a lack of appetite quite severely, I really struggled to eat and so one day I took my daily dose after just having a slice of toast. That one slice was not enough because I then developed the most severe stomach pains ever as a result of not eating enough to line my stomach.

By the time I went back to see the rheumatologist 2-3 weeks later, he agreed with me in that it didn’t look as though the side effects were going to ease and quite frankly I couldn’t deal with them any longer and so I came off the sulfasalazine. The rheumatologist suggested I try the methotrexate but I decided I needed a break to recover from the sulfasalazine side effects and wanted some time out just on the Arcoxia which I have no side effects from and tolerate well. 

With my rheumatologist being Chinese I asked him about Chinese medicine and any other complimentary medicines / therapies that he thought might help but he was incredibly dismissive about these, so much so that he just didn’t seem prepared to discuss these, or even the role of food and exercise, saying that none of these things were proven to slow the progression of the disease down. He may well have been right but I guess a part of me couldn’t help but think that perhaps he was so dismissive of these complimentary therapies because he doesn’t stand to make any money out of them, unlike the drugs! I don’t know, maybe I’m being too harsh on him. But I find it very hard to trust that a doctor has my best interest at heart, when I know he most likely makes money on the more drugs / more expensive drugs he dispenses to me, not to mention all the follow up consultations and tests monitoring the side effects.

So since June 2013 I have just been taking my Arcoxia, managing my stress levels, eating healthily, stretching and exercising and getting lots of rest. I have to say with the odd exception of some severe fatigue episodes and a couple of painful flares, I’ve been feeling pretty good. I know many doctors and even fellow arthritis sufferers may disagree with my approach and feel that I should be taking a DMARD to try and slow the progression of my arthritis rather than simply managing the symptoms of pain and inflammation and that’s fine because everybody is entitled to their opinions. But for me, I want to delay moving onto the more toxic and potent drugs for as long as possible because whilst they may, and it is a big may, be effective in slowing the progression of my arthritis, that benefit is most likely to come at a cost of side effects which leave me feeling worse than the arthritis itself!

Are you an arthritis sufferer? What drugs have you tried? What has been your experience?

Love Sheen xxx