A twenty-something living with multiple chronic illnesses. I am intent on being an advocate for others just like me. Providing hope to others that despite our circumstances we can lead a full life. We will win this battle.
It's been a while since I have been on here- there have been lots of changes and lots to update you on- but I shall tell you more in later blog posts to follow!...
As for me, lately I have been feeling like I'm on a hamster wheel trying to keep up and not miss out on family/friends events yet it just causes more recovery and down time.. Does anyone else experience this?
I made a decision around Christmas that I wanted to “be more present” I had some incredible friends who stuck by me through hospital appointments and admissions for quite literally years with me barely leaving the house.
Since some of my symptoms/conditions I have a bit more grasp on now (mainly my heart conditions-thanks to steroids and medical advice from cardiologists) this also comes with the opportunity to be able to leave the house a fair bit more than when I was previously collapsing or seizing in the street once a day...
(Although my stomach and colon, are still my most embarrassing, unpleasant and painful symptoms.)
I guess what I am trying to say is, there is a big road ahead of us with chronic illness, our journeys will never be linear to our "cure" of course we will have flares followed by better periods..
The difficulty I have dealt with lately is being "better" than totally bed bound at one point, but also not 100% managing my condition yet..
I'm really trying to discover a balance of my chronic illnesses stop me (-which isn't easy given on some occasions I have gone from laughing and and having a great time with friends to on a morphine drip in hospital in a matter of hours..)
So, my question to you lovely lot is..., I want to know from you guys if you almost “overcompensate” when you do have the opportunity to socialise?
For me, it can feel like so long since I have felt "normal" and socialised after the majority of my weeks are still spent in endless hospital and doctor waiting rooms and in the midst of all that a lot of time alone..
I want to feel "normal", I don't want to let others down, I still want to be invited and be able to attend events. Yet in turn sometimes by pushing myself to go and make sure I have a great time and feel "normal" it also causes me to spend days in recovery and my conditions to be much worse if I hadn't gone...
Please tell me I’m not alone on this one? Has anyone gone through this or is going through this? How are you managing to find that balance when being able to socialise once a week/fortnight/month, yet you are still sick.. still trying to find management of your conditions.
I'm currently writing this blog post from my hospital bed, I've been here 24 hours and successfully finished one book, cried enough tears to fill my array of sick bowls around me, and well on that matter - also thrown up in far too much far too quickly so that the nurses are now struggling to keep up with the rate of my stomach repelling! - Good times!
I wanted to touch on a subject that I have posted about a few times on my Instagram but not so much on here, and that is the loneliness in hospitals, particularly as someone who is chronically sick.
The reason why I mention the focus is more so on someone who is chronically sick is because hospitals are indeed familiar places to us, we have our array of doctors to help manage every aspect of our chronic illness, and as such we are used to knowing our way around these hospitals... not to mention being admitted for ill health or arriving in A&E is very much something we have history with, more so than someone who has just broken their leg and is in for an overnight admission, but all the same - hospitals are incredibly lonely places whoever and whatever you are in for!
I wrote a recent post about how my mindset has developed this year about life generally and chronic illness, I feel more confident in my "unknown" future and really try to aim high rather than being angry and sad with life for my chronic conditions like I once was.
Yet, despite all of this progress, my most recent hospital admission reinforced that yes, I was strong, yes I had been dealt with a crappy hand, and was dealing with it, considerably well in my opinion... I was still petrified.
The hospital I was admitted to - Charring Cross, I visit a couple of times a month, for different doctors across different departments throughout the hospital, not to mention I have had overnight stays there rather a lot- its suffice to say I knew the building.
Though its something else laying alone, in a ward full of strangers also considerably unwell and scared themselves, being poked and prodded every hour for your observations, being sent down for scans through the night, lack of privacy.. waiting all day on that one visitor who is making a trek in, or perhaps like myself some days I had a handful of my loved ones wanting to visit me.. all arriving near enough within the same hour..
so when they left? I was by myself back being woken from my constant naps for the next round of IVs, to be asked if I had gone to the toilet yet...
I dont write this to moan and complain - (ok slightly needing to vent!)
Though, this is my reminder to you, please don't forget about us!
if you know someone who is admitted in hospital, reach out to them, flowers and cards can be lovely, but if you have time and its not too far away, we much prefer having YOU even just sitting there next to our beds, makes the world of difference when our days drag into one.
In all honesty, when I first got diagnosed with chronic illness I was very much angry and frustrated with the world...
Everything as I knew it had changed. I no longer worked, I was scared to leave the house due to my bowels, sickness, bladder, eyes, heart being so unreliable and causing me to be admitted back in hospital.. things I used to do as hobbies were either out of the house, or I was simply too unwell, depressed, scared, to do them...
But this year something changed... (no I wasn’t cured of my lifelong illness)...it was my mindset
I realised that whilst I had variables I couldn’t control I also had variables that I CAN control, so I decided to be proactive about it...
That started at the beginning of the year with getting rid of my doctor who regularly advised me not to aim “too” high and that I was always going to be sick, (yes, he was partly right, but I didn’t need that attitude in my life!)
I also focused on doing what I could when I could, and not letting fear stop me. Or else my life would continue feeling like it was slipping away when I lay angry in bed because my body was playing up again...
In my most recent hospital admission my sister brought me this swear word colouring book, I guess for me it sums the situation up quite well... yes chronic illness can make you say every swear word under the sun, make you want to kick, scream and shout... but you also need to take time out and work on your headspace, find different hobbies that you enjoy and make you feel good-for instance colouring!
So just a reminder, no matter whether it’s chronic illness or something else crappy going on in your life right now, find a different perspective, what can you control?
Let me take you back to a little over two years ago, I was with my boyfriend of nearly two years, we had not long moved into our first place together in North West London... we woke up, showered, got ready and commuted all the way to the city together (our offices at the time were only a few streets away), meet again at a food market for lunch, return to the office and commute back home dinner, film and bed... ok that sounds quite boring - usually a couple of evenings in our working week we would socialise with our colleagues also.. but you get the idea, life was good. We were happy.. We craved adventure, talked about living around the world, and never really stopped to realise how fortunate we were..
Me (pre-chronic illness) and my boyfriend
Flash forward to today, my boyfriend is working from home and I haven't worked in over two years, my weekly routines are varied in so much as some weeks I have eight hospital appointments, other weeks I only have the one, some weeks I can shower a couple of days, others its a blessing to sit in the shower with my boyfriend watching over me making sure I don't collapse, slip and hurt myself (we have dealt with this so many times)..
We now talk of our future home being commutable difference in the UK to my parents so they can still visit weekly. It's a rare and exciting month for me if I manage a couple of social events.
I'm not writing this to complain, heck I'm writing this to tell you how thankful I am that chronic illness came in my life and changed my perspective like this. I am grateful not for things but for people, sacred moments spent with my loved ones means the world to me, when simply getting showered and dressed are two of the biggest difficulties in my day.
So how has chronic illness or chronic pain changed your perspective on life?
Things have been hectic for me, I now have so many doctors and hospitals involved in my care that I'm so exhausted- ok, that sounds like a serious ungrateful moan that I would have been disgusted at myself for saying even six months ago when I was desperately trying to get more doctors, more opinions and more help... and well that's exactly what has happened..
When I went through a stage of being completely bed bound - I sometimes couldn't even get up to go to the bathroom, meals were fed to me and I struggled to see any positives in my days... I would spend awake hours in bed researching EDS doctors, hospitals, pain specialists, gut specialists... and my old GP was so fantastic that they wrote ever referral for every print out and research I had done on my latest doctor find. However, I am now in a place I see several pain specialists, several gastroenterologists, several biofeedback departments... etc. I receive conflicting opinion and I almost feel more confused than I did six months ago..
Me in hospital
On one hand I have doctors trying to change my medication I have been on for years that works well for some things, and my other doctors saying I can't come off it. Meanwhile when I discuss this yo-yo advice and treatment to my GP they mainly give me the advice that it is my treatment, and body and that I need to cut out doctors that I don't think are assisting with my management...
I feel a lot of pressure to undertake a decision to no longer see certain doctors, to follow one treatment for three months and then another the next. Do I trust my doctors that have known me for years and seen whats worked for me and what hasn't? Or do I trust my more recent doctors that want to restart my treatment with a fresh perspective?
I am wondering if any of you out there have had this situation involved in your care? How did you make a decision? I would love to know. Hope you are all doing ok.
Hi, My name is Claire, and at the ripe age of 21 I was sat down with my partner and told my illness that I was currently experiencing wouldn't ever go away...
It was a brutal slap in the face that came from nowhere, I had spent quite literally every day for close to a year researching doctors, my symptoms, having doors shut in my face by doctors as they didn't know how to help or what was wrong with me, I was made to feel like I was going mad, and even began to question myself- was I imaging all this pain, subconsciously collapsing, dislocating body parts, easily bruising everyday.. the list is endless, though I knew it wasn't in my head though!!
Yet, as the months, and now years have rolled past with since my first diagnosis, and now there is a vast list - you can check out all my conditions here. Still I have not been "Cured" - just as they told me.
However, this photograph was taken two days ago. I posted this on my instagram with a short story of why I am determined to be an advocate for invisible illnesses, and my most recent experience.
I don't look sick because I spent an two hours, preparing and having assistance showering, I spent another hour putting on my make up doing my hair, and getting dressed up.
I plan my entire day around any chance I get to leave the house and have a taste of normalcy, (whatever that is). I muster up all the courage I have to walk out that door and take on the world even though I am sometimes a twenty something, shutting her front door closed and wearing a nappy - people still don't ever suspect. Just because you have makeup on and your hair is done the stigma should not be that we are "cured" or "well" or that we were "faking it"...
The problem with invisible illnesses, is.. well they are invisible!! There can be pros and cons, but this is my reminder to any other spoonies, and non-spoonies for that matter - having an invisible illness does not mean it is not real, it does mean our condition is any less valid if you can't "tell" from looking at us, and neither is it attention seeking. In fact, more often than not, from my personal experience I often avoid discussing my condition to friends because my conditions are complicated, embarrassing and often people are left shocked as they had no idea quite what my condition entails as I don't talk about it. (-hence I started "The Hopeful Chronic")
So please don't forget, I often dress up nicely as a form of self-love and to treat myself. I spend days cooped up at home unable to leave the house due to nausea, you don't see how much of a big deal going out can be, and is. I do it to feel a little more "normal" and not Claire the sick chick... I don't do it for you, I do it for me. Since I don't look sick on the outside it doesn't mean it is not true.
I am writing this the day after my 24th birthday, I can truly say looking back on the past year being 23 I have learnt so much about myself, and it has been one of my most eye-opening years about myself in my life so far.
Yes, my 21st, and 22nd years were spent getting some hugest monumental, lifelong diagnosis's which will also be pinpoints in my years, yet my 23rd year was about acceptance...
I guess I could say, I struck a wall one day around Christmas time and realised I am not being my true self, and it felt like my life is flashing before my eyes. I was scared to leave the house, I had encountered so many social interactions where I was unwell, expwwerienced embarrassing symptoms, or felt like a burden. That I routinely declined my friends invites to ever do anything for close to a year, I was petrified. I refused to speak to many of my friends, not knowing what to say, when all I could talk about was complaining about my conditions..
Yet I decided to make a change this year, I sharply inhaled, froze and assessed the situation- all of my diagnosed conditions are chronic, as such I can continuing living with this mindset angry at life and embarrassed of my conditions, too anxious and afraid to leave the house.. or I could own this, and do everything I can to feel good and live my life.
I now try to work with my condition rather than against it, I am learning to listen to my body, pack extra medication and a spare pair of pants, I always carry water with me and I make it clear to those around me that I'm socialising that I m
The most challenging part of my diseases is learning to accept that it is part of who I am and I shall never be able to escape it. I have to live with it and embrace it, yes it can be embarrassing, but if chronic illness hasn't already taught you, those friends that can sit there whilst you are having a rectal examination (yes I can say it was quite the bonding experience!! haha) are not uncomfortable when you throw up or collapse, instead they want to know and be there because they care about you - and those are the people I want in my life this year, because whether I like it or not my conditions are here to stay.
I spent the weekend away with a friend a few weeks ago, we have known each other far longer than me receiving my diagnosis's and sometimes, I need to see people that knew me "before".. Do you ever get that?
We caught up health wise on my treatment plan, and how I am coping.. I explained that there is always a difference of attitude to those that knew me before I was unwell and those who have met me after.
I have met countless people since receiving my diagnosis's and the day my life changed forever (not just doctors, but (now) friends and acquaintances.. yet there is always this dark cloud overhead that my chronic illness which inevitably need to be addressed at some point sooner or later.. Whether thats from them watching me take my vast array of regular medication, the struggle of food and drink, me cancelling at the last minute, or the more dramatic route, when I have a symptom!
I have always been an upfront person, it's just in my character I don't like to skirt around issues, and I believe the only way to approach things is head on, so mainly I meet people and tell them within the first few times of us meeting if (I feel it is necessary) as I may be interacting with them, they are a friend of a friend, etc..
Never is there an appropriate time to tell someone you barely know that you are chronically sick...
On the outside they see a young lady, in her twenties, trouble free, smiling, made up and looking presentable... which often amounts to people finding it near impossible to understand the extent of the pain I experience on a regular basis.
Fortunately, I consider myself lucky, my friends that have been with me since getting sick have been incredible, I can honestly say they have seen me through the stages pre, during and (the stage I'm at currently) post receiving my diagnosis.. If you have read my blog you'll know there are so many things that come hand in hand with getting sick, besides from the physical symptoms, your whole perspective on life changes, what is important to you, your goals, those around you, appreciation...etc!
I see the world in a whole new light.
I can honestly say, despite everything I wouldn't go back to the person I was before I was sick, yes I often miss my "old" life, but whether I'm with old or new friends my appreciation for life and them is far greater now than it ever was, not to mention I have met some amazing people!
Recently, I had a conversation with someone about how much of a turn my relationship has taken, yes my partner didn't sign up for it, our first date I didn't complain of pain, run off to the bathroom unwell, or was unable to eat, I was a healthy twenty-year old...
When I replayed what they said- "he didn't sign up for it he could simply walk out and never return, no one would blame him - a chronic illness was not on the cards when you met" it was like a dagger in my chest. Who were they to tell my partner that he "deserves a medal"?
In my experience, my relationship took such a different turn upon learning just how ill I truly was, and how much it really would impact my life, well.. forever. It can be hard as someone living with a chronic illness, you struggle to find others who can understand what you're going through with emotions, symptoms, treatments etc. Yet my partner has always been the one that has understood it 1000% more than anyone else in my life; he is there all the time supporting me along every step - at hospital appointments, when I am rolling around on the floor crying in agony due to my pain, helping me clean up after I have been sick, supporting me through each diet I move to in hope that it will aid just 1% of my symptoms.
Yet, for me this is what a relationship is, and should be expected to consist of (OK, maybe not my 'chronic illness' per say) you support and love each other through the highs AND the lows.