Welcome to my story!

 Hey there! Thanks for exploring my page - my name is Steph I'm a recently qualified physiotherapist. Like everyone in my year that has just graduated (big up the kcl massive!!)  I love what I do, I am inspired by those I meet and help and I am excited about what the future may hold. However unlike everyone else in my position I have a few extra tags that hang around my neck in the form of ankylosing spondylitis, fibromyalgia and endometriosis... I started collecting these diseases in 2012 - when I had an appendectomy and the Dr informed me that he had to get rid of a considerable amount of endometrial tissue in my abdominal cavity, which would explain the years of excruciating periods. My ankylosing spondylitis story is a bit of a longer one... when I was 11/12 I began experiencing high levels of pain in my knees, during my teenage years I had numerous Drs apps, physiotherapy treatments, MRIs and nothing was found. In 2013 I had my first appointment with a rheumatologist, who after taking blood and reviewing my MRIs concluded that despite "huge abnormalities in my inflammatory markers" he was positive I did not have any rheumatological condition. So you soldier on as expected when one day in 2013 I woke up and I could not walk I was in so much pain, I was given a prescription of tramadol and went to my amazing physiotherapist who agreed to take a step back and reassess my whole body to see if he could find anything.. it took him all of 10 minutes before he lifted each leg up in turn and my feet would go numb. He then decided a referral to a spinal consultant may benefit me.. now I had had back pain and stiffness for a few years but as I worked with horses I put it down to years of heavy lifting and abuse that my body just protested. I went to the spinal surgeon equipped with a letter from my physio, he arranged an MRI for the next day, one week later I was sitting in his office with all of my blood work over the past 10 years and the pictures of my recent MRI. He turned to my mother and I and said the following "From all our results we have accumulated and your MRI results it is clear that you have ankylosing spondylitis" from that point I have had numerous medicine changes, a long course of steroids (which induced fibromyalgia), days I couldn't walk, days I couldn't sit still, days I couldn't stay awake, numerous sleepless nights, needles poked left, right and centre, MRIs, CT scans, x-rays, red,hot, swollen joints, put on weight, been physically sick in the morning with pain, I've cried, laughed and gotten angry. All whilst completing a full time degree which would mean having the career of my dreams, and am now at a place where it seems that I may be beginning to manage my diseases better 3 years post diagnosis, I've become more educated about not only chronic illness but life and other people, I am less quick to judge these days and more empathetic to those around me. I've learnt to love those close to me and forget those who weren't there for me in my hardest times, I appreciate everything in life a lot more and have become more determined to live my life the way I want not the way these diseases dictate. So this is my brief story and this page is dedicated to my life with my mini collection with no holding back. I hope at least one person can be helped by my stories and then I've achieved something. 

Flaring, flaring, flaring!

Flaring is a word all spoonies are all to familiar with... But for those of you unsure what we mean by this I direct you to the picture below. This is my first indicator that I am going to be in trouble very soon. My knees go red and hot, then they swell and the pain begins, it then spreads to my back and hips and pretty soon my body is alive with pain and electricity. I can't move but I can't sit still.. I can't weight bare on my legs as each step is nauseating and my legs more often than not give way. As I reach for the tramadol, ibuprofen and my hot water bottle I know I'm in for the long haul. I can't eat, I can't sleep, the only relief is to rock back and forth gently with heat on the worst of the pain. This can last anywhere from one day to one month. But like many chronically fabulous people I refuse to let this disease rule me so drugged up to the eyeballs I limp slowly towards the train station to get to uni, and complete my degree. One of the worst things for me about a flare is they can be so unpredictable - you can think you know what sets you off but then your body will just all of a sudden decide that actually it will take offence at something else for a change and your left chasing (albeit very slowly!) your tail wondering where you went wrong..?? 

Fatigue - the biggest baddest wolf??

I'm part of an amazing support group on Facebook - any newly diagnosed peeps I suggest you get searching, these pages helped me wade through the bog of weird and wonderful symptoms, and I've gained some really good advice. But I saw a post recently discussing the worst symptom of AS and fatigue kept popping up answer after answer. Now I have to admit I've really struggled with fatigue, and this symptom causes the most friction between myself and those around me. I've tried explaining it as wading through knee high mud with bricks tied to your legs.. But it's so much more than that, it's physically not being able to stay awake even if you want to, its sleeping all day and feeling guilty, it's not being able to sleep due to pain but being so tired all you want to do is sleep. And even after all my other symptoms seem to settle down the fatigue is still there smothering my enthusiasm and attempting to rule my life. I have yet to find anything that helps my fatigue as getting a good nights rest (as has been suggested to me numerous times!) just doesn't cut it. But this got me thinking is there not enough emphasis on fatigue during appointments, should our consultants and nurses be addressing this symptom more as it clearly affects most spoonies considerably? 

Education and chronic illness - making it work.

Feeling extra proud in my scrubs

I was unfortunate enough to be diagnosed with AS months before starting my physiotherapy degree and fibromyalgia 6 months into my first year, and went through many unsuccessful medication trials whilst studying. I have recently finished my degree and am hoping to pass on some tips to those studying with a chronic illness. I am very headstrong and will not willingly admit I need help, so for many of my assignments I battled on regardless of how unwell I felt, and part of me thinks that I also didn't understand how unwell I was until I began to feel well again. Unfortunately my work suffered as a consequence- so for any of you out there, please use your inclusion plan, please ask for help- it does not make you weak, it makes you smart. Pacing and prioritising is another BIG must. A lot of planning helped me achieve this, by planning ahead and having a plan A and a plan B I was able to pace my revision, my essays and my placements and whilst in exam season or on placement prioritising what was important helped me stay on top of everything. I completed six placements in the 3 years and I was surprised how well my body coped with each placement, and as each came and went my confidence in my body's abilities grew- this is why it is so important to know your limits, but also not be afraid of pushing yourself a little at a time. As long as you pace yourself you will be able to reach wherever it is you need to go or be able to do (this took the longest for me to realise!) I used to adopt the all too common "Boom and Bust" feeling great- do too much - feeling crap cycle, this took me around a year to break and slowly build myself up again. But I think the most important thing is to have a good group of friends around you that you trust, and be able to openly communicate with them how you feel and what is going on. I had a small group of friends who without them I would not of been able to get through the toughest days, but I did and I have them to thank. Don't be afraid of doing something just because you have a chronic illness, give it a go and you never know you may well surprise yourself!!!!!

Meeting others spoonies

When you are first diagnosed that lonely feeling washes over you. No-one around you, try as they might can ever understand how you feel or what you go through on a daily basis, and when you finally find someone "like you" that instant mutual understanding and bond is formed whether that be online or in person. I was lucky enough to find someone who suffers from Lupus at uni, she had been diagnosed longer than myself and I found her a wealth of knowledge and understanding. The unbelievable feeling of telling someone about what you were experiencing and truly knowing they understand exactly what you mean is invaluable. Support groups set up on Facebook and other social media platforms work very well also. 

However I have found a disappointing side to social media, I was contacted through instagram by a fellow AS sufferer who I was more than happy to help and listen to, however he quickly tried to turn it into a pissing contest, constantly reinforcing that his AS was much worse than mine. Now as much as this will be the case with many people as no one is the same, I beg of my chronic illness family do not isolate, intimidate or attack anyone who is in the same position as you, able-bodied people already do this for us! We must stick together as one united family and be understanding that everyone deals with things differently and that doesn't mean they are wrong. 

Life is cruel at times, and is too short. Do what makes you happy.

This is my bliss, even on my worst pain days I would gingerly climb on the back of a horse and for one hour of the day forget my troubles and feel free.

The balance between exercise and rest.

I had a relatively relaxed weekend, I hadn't really stopped since finishing university and it suddenly hit me on Saturday and I spent most of the day sleeping. 

But then on Sunday I found my pain levels had increased and I decided to make sure I did my exercises and moved around more and yet come night time I was once again in pain. This morning I got up and tried to be productive and then spent most of my afternoon with my bae (in the picture) and I thought for sure moving around more would help. But now I'm at the point where the pain hasn't really changed and I'm just tired from lack of sleep due to pain. So I can't help but wonder can we ever strike the balance between being active and healthy vs listening to our bodies and allowing yourself to rest when the fatigue becomes too much...??

Self-esteem are we too hard on ourselves?

Hey lovely readers and fellow spoonies! So my family and I went out to dinner tonight and we happened to see some people I went to school with. I had a bit of a rough time at school and didn't have great self-esteem thanks to some hardcore bullying. When I left school between 2008-2012 I had a big boost in self-esteem I had lost all my teenage puppy fat and I had a good group of friends, a job I loved and I was happy - when I bumped into people I hadn't seen in years I found myself with a new-found confidence. However since being on many different medications and a prolonged stint on steroids I found myself shooting up from a size 10/12 to a size 16/18, and as my size grew despite my best efforts (I am and always have been an active person and am into healthy eating) my self-esteem once again plummeted. Tonight I still found myself hiding from these people and wondering if they were discussing my weight or how I looked. As much as everyone says judging on looks is shallow it is common practice to do so, but then I sit there and think they have no idea what I've been through ! This is what I hate about invisible illnesses - most of the time my diseases don't show on the outside, and I'm not a big advocate of discussing my illnesses on my social media because I'm afraid half the time people will think I'm just complaining! And  on Facebook a picture I put up of my pets gets more interest than a real, raw status about my health struggles. 

So this is what I am pondering, all fellow chronically fabulous people know what a toll illnesses and necessary medications have on our bodies, and the way we look isn't because we are lazy, greedy or even at the other end "anorexic" it's because our bodies are going through huge daily insults, and we are forced to take medication that is not without huge side effects just to get through a day. So why should we be worried about what others think? This should be one less thing to affect our self-esteem, so from today on I've decided to try and love myself the way I am to have one less thing to get me down. 

Doctors- luck of the draw!

I don't know what everyone else's experiences with Drs are but I found that it's a bit of a minefield as to whether you get a good one or an awful one! 

I have a few experiences which beg beyond belief!

My first exeperience was at a Rheumatology centre who shall remain nameless. I was sent to them post diagnosis and after failing several NSAIDs and sulfasalazine for Anti-TNF. I had been with this centre for about 2 years and had trailed humira (no relief) and enbrel (severe site reactions!) so eventually going into my app 1.5hrs later than my scheduled time (this was not unusual either!) I was discussing the benefits of enbrel and the conversation went like this: 

Dr: " Do you feel the enbrel is benefitting you enough to warrant continuing despite the site reactions?" 

Me: " I'm still experiencing high levels of pain in my knees, pain as if my muscles are going to burst out of my skin and I can't keep my legs still, I'm still struggling to sleep due to the pain"

Dr " I'm sorry but I'm only interested in your back pain as with AS we only focus on the spine"

Me: "I can't tell you if my back pain is any better because the pain I'm experiencing elsewhere is dominating my life, surely all this pain is under Rheumatology jurisdiction?" 

Dr: " You have AS which is in the spine so that's all we treat" 

Safe to say I transferred shortly after this to Kingston Hospital - and boy what a difference! They are on the ball, they listen and they treat me holistically as a person and not just a spine! Coincidentally I went back to my GP with my leg symptoms and muscles bursting out of skin feeling who diagnosed Fibromyalgia which is a Rheumatological condition!! I couldn't believe the incompetence of my first Rheumatologist! 

My second experience of bad doctoring was at my GP. My regular GP is always busy as he is very popular (and rightly so, he is brilliant!). I needed an emergency app as I was experiencing extreme insomnia to the point where I was getting at most 4hrs sleep a night, partly due to pain but partly becuase I just couldn't sleep!!!!!! I went to this GP who didn't believe in fibromyalgia, she also didn't believe in giving people medication to help them sleep, said I wasn't sleeping so I must be stressed and I should de-stress myself and then spent the next 10 minutes lecturing me on taking tramadol and that I shouldn't be taking it even though it was prescribed by my Rheumatologist ! When I told my rheumy she was appalled and said that I shouldn't ever listen to a non-regular GP who doesn't know me when they talk about medication my rheumy has prescribed. 

Those are the only 2 experiences I've had where I've really been face planting my palm, but I'm sure there will be more, seeing as the amount of time I will have to spend in hospitals and Drs surgeries in the future! 

I think my message from this would be - if you aren't happy get a second opinion or change rheumatologists. Don't take what GPs say as set in stone - if you're unsure ask your rheumy for advice ! And it is really important to have a GP and a rheumy that you can build up a relationship with and trust. 

You will become an expert in your diseases and your body so trust yourself and your body! 

A spoonie abroad!

I'm going on holiday soon! 3.5 weeks travelling round the south of France. As well as being filled with the excitement and anticipation everyone experiences, in the back of my mind I'm also thinking about everything extra we spoonies need when abroad! How much of each medication do I need? ... I need to organise my HAH deliveries around my trip... I must not forget my injection or my sharps box... Do I need to refill my "emergency" medication prescription? And many more questions! 

 

Luckily I've had some practice at this now and I've found the key to preparation for a spoonie on holiday is list making! That way in my brain fog state I don't need to remember what I needed as I wrote it down ! My list is about 1 page and a half of A4 and I tick off what I get as I go. You need to also make sure you get any prescribed medications well in advance and always have at least 3 more days worth (just in case!) and I always keep them in a separate box (yes I need a whole box!) so that I do not lose track of them! 

 

I also find find that with travelling etc... my normal routine can be thrown out of kilter so I also set "medication" alarms to remind myself to take my medication when I should so that I do not get carried away in all the excitement and suffer the consequences later on! For those of you who need to travel with injections, you should ask your consultant for a letter proving you need them and you can buy these brilliant cool bags that last for 24hrs! 

 

My final word of advise would be to take any essential medication in your hand luggage in case your suitcases do not arrive at their supposed destination- that way you are not stranded with no clothes or medication! 

 

Enjoy your  summer holidays my lovely warriors! 

Start by doing what is necessary- then you begin doing what is possible and before soon you are doing what you once thought impossible...

Catch up!

Proudest day

So haven't updated this in a while as it's been a bit of a whirlwind couple of months! So I've graduated from uni with a 2:1 in physiotherapy. What an amazing day that was ! I coped well with sitting down for 3 hours straight and was only bothered by my new shoes rubbing my feet as I walked across the stage. It felt so good to see how proud my parents were and how much we had achieved together as a family. I've also managed to get my job in my dream NHS trust and should be starting as a junior physiotherapist in the next month or so.. it will be nice to get back into a routine as I find that I cope better that way than when each day is different - not sure if that's common with AS ?? I've also been approached to help coach a NASS group in the evenings which I am very excited about ! 

And I've only been back from an amazing holiday in France for around 24hrs. We spent 3.5 weeks travelling round the south of France. I unfortunately had a flare in my knee and ended up on crutches the day we were due to go, but 48hrs in the sunshine and everything settled down enough for me to walk 15km round Bordeaux and not suffer the next day! Do you suppose our rheumys could prescribe holidays as part of our treatments!? Ha! We've got the knack of travelling now - I make sure the bed is down and I can lay down and sleep, read or watch a film but also get up and move around in the back, however my mother has discovered how comfortable it is and I ended up having to swap with her for some of the journey !!! I didn't get to do as much walking as I would have liked due to some dodgy weather in Biarritz (I'm talking torrential rain for 3 consecutive days!) and then my mum managed to fall over a boulder and hurt her foot/ankle and despite my protests has only just decided to go to A&E tomorrow (the injury was 2.5 weeks ago!) and despite adopting the PRICE protocol it doesn't seem to be improving! So watch this space - place your bets today broken 5th metatarsal or severe ankle sprain? I'll keep you updated! 

All in all my body seems to be behaving itself - although I'm fighting insane insomnia right now!!! But I've got my Netflix and Tea - it'll all be fine ! 

 

Also side note - what's up with that new arthritis advert!? Not really sure what the message is there?! 

 

Anyway have a good day/night ! And may it be a good pain day. Peace out ✌🏼

The in between..

So an update - my job at my new trust is imminent. But having spent since June without any real routine it got me thinking... I am much better off with a routine, any time I've been on placement I am much better off than when I'm at uni and my schedule was constantly changing. 

 

After being on holiday for the month of August and indulging myself, I gave myself a kick up the backside last week and got back to healthy eating and exercising (to a point). I know a lot of people find cutting out gluten and/or dairy and sugar really helpful, however I have tried those diet alterations prior to being diagnosed in an attempt to get rid of my (undiagnosed) all over body pain and it did nothing for my symptoms. I choose to eat a healthy, balanced diet with plenty of fruit and veg and hydrate well with water. I then try to exercise everyday, on low pain days I may attempt walking or cycling or I've found some really good "hit" sessions for beginners and if I find I can't do what the instructor is doing I simply jog on the spot until the exercise changes. On a high pain day I will do some gentle stretching and do some specific muscle strengthening (which is low impact and takes around 10 mins), and if it's a really high pain day I just try and make it out of bed ! (Luckily for me at the moment these seem to be scarce). I'm also hoping doing exercise will also bring some routine and structure back into my life until I start working, as my body really responds to routine. 

 

I have a rheumy appt in 2 weeks I have some concerns to bring up - I'm having on and off issues with mouth ulcers, having up to 7 at once, and my mouth is always really dry. I also wanted to discuss the constant and frankly embarrassing sweating- I sweat at the drop of a hat - and I sweat A LOT! It's only been over the past year or so I've noticed it but I can't wear certain colours that show swear up or I feel everyone is looking at me and it makes me feel really self conscious. Also I'm having some troubles with my bowels which is also relatively new but also concerning me. Luckily it seems the simponi still seems to be doing its job, but I also seem to be suffering recurrent urinary infections which I probably will mention to her also and see what she thinks. 

 

Ill let you know how I get on! 

Is it summer yet!?

Hey so I haven’t updated this in a while life has kind of taken over ! But I’ve set up an Instagram page now under “Spoonfulsofchronic” in the hope I can update more regularly on the day to day goings on! 

So I survived my first rotation as a fully qualified physiotherapist in oncology - a real eye opener to some extremely brave people in heartbreaking situations, but it also got me thinking, I hear a lot of spoonies talk about people telling them “at least it’s not cancer” when talking about diagnoses... and having seen cancer at the toughest end I am daily thankful that none of my family has had to endure that terrible disease, but I can’t help wondering - should we be comparing diseases that are worlds apart? I’m not too sure I have the answer on that! 

I bet you’re wondering why there is a pool in my photo! Well it’s because I’m lucky enough to be doing my rotation in hydrotherapy! And man what a difference being in a pool 3x per week makes to my stiffness, pain and all over mood! My manager has been amazing and let’s me exercise in the pool in between patients because working NHS hours with 3 chronic illnesses doesn’t leave much time to exercise!! So my advice would be get in the water and get exercising ! I sleep better, I am much freer and in less pain even after a 12hr day. It’s been the Easter weekend and I’m already suffering from not being in the water for 3 days! 

I’m also trialling dry needling with my physiotherapist and although it hurts BAD whilst he is doing it, I think it’s actually making a difference! It’s meant to interrupt the pain signals from the nerves and so far I’ve had less pain and no flares! 

In other news - when will the sun make an appearance!?

Thanks for reading!

Stephanie