Changes, Welcomed Changes

I’ve always been known as someone who doesn’t do things by halves.

Some examples?

-          I have the most progressive disease my Gastroenterologist has seen.

-          In a three-month period, my colon disintegrated but I didn’t present with a flare up of IBD!

-          My GYN surgeon removed a tennis ball cyst off my ovary which should have been causing tons of problems, but wasn’t

-          When I got sick, I was really sick; without much indication.

See? Didn’t I tell you?

Things for me come all at once or not at all.

I am currently sat doing not much because I cleared my to-do list to have a couple days of down time. Why?

Well, in a couple weeks I start a new job. Almost 70 miles away from home. And this weekend, my OH and I go there to find my rental property for the first six months.

All the scary, big, life changing feels, right?

Thing is, I could have found a job closer to home. I could have found a job which would mean me and my OH could have lived together next year. I could have found a job that was just a job nothing more. And that would have been me, this time last year; pre-surgery, pre-ostomy. I would have settled for a job because it was money and I needed money. It was low risk, low responsibility and it was just a means to an end. I’ve felt like this about many jobs in the past; always thought it was safe to take a job I didn’t like because who would want anyone to work for them who was chronically ill, unable to show true commitment?

But it’s not me now.

The last six months I have felt incredibly well. I wasn’t expecting it and I admit, it was beginning to freak me out; I’ve never been that well with my Crohn’s in all the years I’ve had it so far, I hadn’t expected surgery to be so… life changing. So, by being so well, I’ve pushed myself. I’ve worked hard on my own blog, reached out to people and sought opportunities I would never have dreamed of before. Admittedly, I’ve had the free time to be flexible and explore these opportunities, and finally, it’s all paid off.

My job offer was 40% luck and chance and 60% recommendation and me, in all my gutsy glory.

I don’t mean to be big headed, I hope this does not come of like that, but jeez I still can’t believe it, all of this is happening and its happening to me.

So, in between all the stress of finding a place to live, moving to a new part of the country, starting a new job – it’s been 14 months since my last one, yikes! – I am incredibly proud of myself. I am internalising all of that so that on my first day I don’t bolt – panic and lose all confidence. And to anyone else, this is just a job and it’s not a big deal but it is to me. I have worked hard since surgery, whilst recovering, I’ll add, to figure out my plan; of what I hope to have my life be. It’s a solid picture now, instead of the blur it used to be. It’s filled with a house, my OH, some dogs and plenty of food. And it feels achievable for the first time in five years, since the diagnosis. Things finally feel stable, when I once felt so unsure about my life, myself and what I was actually doing. I don’t question things these days, my mellow attitude comes from – I hope – of years of learning to live with a chronic illness.

And maybe this will change if I get sick again – which is a possibility, a chance it could happen – but I am hopeful my ‘new’ attitude doesn’t falter if it does.

I hope this change, this welcomed change, is going to stick.

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It Creeps Up on You

Diary Entry: 29.04.16

It's two weeks until my surgery.

I've finally had all my paperwork for my pre-op and my admission for the actual surgery.

It's come around fast. Faster than expected. Even though it was only a month away when I got told it was provisionally booked.

Planned anxiety.

That is what my first surgery was.

Lately, I’ve been finding myself getting less sleep because my head has been stuck in the past. I’ve been struggling to get myself focused on what is happening right now. I am lost in the memories of what I experienced last year.

In a physical sense, my surgeries have fixed me. But how much does the process of surgery affect you mentally? Has it fixed how I feel about being chronically ill? If anything, the physicality of having an ostomy – a badge of ‘honour’, a visual representation of my disease, something I can show to ‘prove’ my illness – has helped. I am sad it got to this but I am happy too. That conflict has the most mental impact.

I remember the days of being stuck in the bathroom, in agony, crying, unsure of how much more I would be able to handle, how much more I could take. When I would need to call it quits.

Nowadays, I am emptying my bag and its mere minutes. Even a change is 10 minutes’ tops. Ten minutes every 48-72hrs isn’t that bad; all things considered.

But how does that – cleaning my stoma, seeing it, looking after it, knowing I am different, knowing I am permanently changed, realising this is my reality – affect me?

Having an ostomy is not the fix some people believe it to be. I am one of the lucky few who has gone into remission and off medications since surgery. I don’t take this for granted at all. If anything, I am weary of this, it could change at any time. My previous IBD remissions have not last long so I am just enjoying the days as they come, at the moment. Even that is a mental battle; getting used to all these good days. They haven’t happened in such a long time nor for more than a few at a time. I am thankful for my current situation.

It doesn’t stop me from feeling lost, confused and downright sad some days. I keep my mental battled hidden, inside my head most days; trying to find distractions from these thoughts; keeping busy to take my mind to other places. I try and write; try and explain my thoughts in the written word. Actual words… they don’t come so easy. It’s still such a taboo subject. Not for fear of being judged but for the fear of admitting what I am feeling.

It is the lack of control I have over these thoughts. It started with one little memory creeping back into my head; when I realise the date or what I was doing last year on this day… and it soon spirals. My pre-surgery experiences were detailed in my blog and my diary. I know what I felt because I wrote it down, I relive it through my own words. It connects me back to my past; it’s like a flood – washing over me with such force, overwhelming and strong.

As I move forward, as the days go on and I get closer to last year’s “good days” I hope these memories move from being sad into feeling proud. I will hopefully see how well I have done – not that I don’t see that already – and how much of a difference a year has made. I will see how being different is a strength and it just one small piece of what makes me who I am, now. Not who I was.

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Fearful

I’ve already had five and a half years with my chronic illness. I’ve gotten used to it disturbing my life and disrupting my plans. It seems to have a knack for doing this, a lot.

What I am not used to is being without medication.

It feels foreign, almost like we are testing the IBD gods, tricking them into thinking I am well.

For all intents and purposes, I am well. Latest multiple test results came back clear; things are looking up for me since surgery last summer.

But that doesn’t mean I feel content with being in remission.

If anything, I feel more scared. I feel fearful.

I could take the medications and I got comfortable with knowing I needed to take them. My life was a schedule of medication, appointments and managing my IBD issues.

So much has changed, its overwhelming.

Despite going through hell before surgery, knowing that that wasn’t normal but I needed to go through it to come out the other end, fit and well. I also needed to get my ostomy to have the life I am currently living, and it is the only reason why I am doing so well. That, and my surgeon’s faith in physically removing my colon to improve my Quality of Life. And it sure has! And managing a stoma isn’t as bad as I have conceived it to be in my head. I have had nothing to be scared or worried about, the support and care I receive for my stoma is beyond anything else.

To go from that hellish Summer of 2016 to this remission of January 2017 – a mere five short months – is beyond comprehension.

Remission is one of those words that medical professional within IBD care throw around cautiously because it’s not exactly an easy road and doesn’t always happen, let alone being quite a complex goal to achieve. I have more important goals when it comes to my medical care; so, remission wasn’t high on the list. I had expected to need my mediation for a little while longer, be on the radar for a lot longer, just so they were watching me. I take comfort it that.

What do I have to take comfort in now?

I am more fearful being without my medication than I was taking it; and I was taking things which were potentially very harmful, but it was all outweighed by how absolutely rubbish my disease was making me feel, how much of my life it was taking away, how utterly miserable I was. And ultimately, those medications led me to surgery and this life I now lead. So, I appreciate all the shit I’ve been through, but I am still scared. Apprehensive and nervous, to boot.

I hope my remission lasts but I know it probably won’t. My ostomy has been life changing, almost saving my life – I can’t disregard my care nor my TPN days for also doing that – but how will it react to my body being unwell? So far, I’ve only had a stomach bug. I dread to contemplate how I’ll feel in a full-blown Crohn’s flare. But considering that that might not happen, I am here enjoying my good days, appreciating the NHS and loving my life, being proud of being an ostomate.

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What Does Chronic Illness Rob You Of?

It wasn't long before I was thinking about how things had changed and how that upset me so much. What else was Crohn's disease going to take from me?

I wrote this the day after my first relationship since my diagnosis with Crohn's disease broke down. I wasn't at all shocked but it did stun me. I had to change. I had changed. But I was fed up and feeling awfully sorry for myself, I started to question who I was and what I was putting out there. I saw my illness as something no person would ever want to be apart of, let alone live along side. I thought my life was over, sadly. 

Crohn's disease robbed me of many things in the first year. My hair due to mediation. Weight loss due to inflammation. My confidence because I had a "pooping disease". Friendships vanished because no one was willing to talk to me or let me talk to them. I felt isolated, alone and depressed. Going back to work was the only thing I was doing and even that I wasn't doing well; I rushed back sooner than I needed to because I missed my old self. I didn't realise my old self was dead and gone with that diagnosis, I had to build a new me, a new self. 

It was a chance for redemption. A chance I needed to take. 

So what has Crohn's disease given me?

It was a long and winding road to today. And I doubt that what Crohn's disease gives me isn't just this list, I build on it every day. 

It's given me great IBD friends, a community of support, knowledge and humour. 

It's given me purpose. A sense of direction. A stronger moral compass.

It's shown me how truely brave I can be. 

It's shown me that you can not judge a book by its cover. 

It's given me empathy, more than I knew of before.

It's taught me to not take good days for granted. 

It's taught me how to enjoy my life. To be in the moment and do what makes me happy.

It's taught me how essential it is to listen to your own body and respect it. 

It sometimes makes me wish and pine for the old days on no hspitsal appointments, no needless, no tests, no doctors, of being healthy. But I know that in some way, shape or form this life was given to me, like this, for a reason. And I just have to find reason and purpose. And that is an adventure. 

An adventure with a chronic illness. 

A blessing , not a curse. 

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Being Chronically Ill at Christmas

Each year I am so thankful I make it to the festive period and survive it. 

Why? 

Christmas for me is a time to reflect and see what I've been through. It gives me strength for the year ahead. We can draw a line under what has happened and focus on continuing my good streak. That's what it always feels for me; I am in a game with my health, praying nothing goes wrong, praying I don't catch something, praying I make it through another season without an admission. 

This year I look back and despite having had two surgeries and many months of agony, I am not hateful or woeful. 

I am extremely thankful. 

Isn't it ironic that to see what you're most thankful for you have to go through something awful? I know that my surgeries might not be the 'most awful thing ever' but to me, in those bleak moment, it was awful. Those days unable to eat, unable to drink, feeling weak and feeble, dependent on everyone else helping me, not knowing if I needed medical attention or just waiting it out. You already know how my summer ended, with my ostomy being created. 

But those months in between surgeries and even leading up to the first one, I was in agony and I did wonder what on earth I had been doing before hand to let it get so bad. But I needed to hear it wasn't my fault and that it was just my disease, it couldn't be helped but it could be fixed. It would be fixed. It would need fixing twice, but it would be fixed. 

I would be fixed.

So who do I thank and how do I thank them?

That's something for another day, another post. Another train of thought. 

Being chronically ill at Christmas is different than any other time of the year because it is hard to shy away from being sociable. It hard to be away from family and loved ones. I am not necessarily forced into be out and about but I do feel that obligation pulling at me to with people who love me, so I can show and tell them that I love them too. 

Being ill yesterday - or any day surrounding Christmas - is hard. You have to muster strength and mental ability to get your body through the day. I struggled abit but I slept well for it. Sleep is so important this time of year for me. What else is key is maintaining a regular routine; eating breakfast at the same time, trying to stick to the 'correct' foods and not indulging too much. This has been key most years but even so much more now with the new ostomy. I have to keep hydrated. I haven't restricted myself in food or drink but I've been sensible and thoughtful about what I've had. The only thing that is some times unavoidable is the time we have been eating, but I respect that aspect and allow it to be more flexible at this time.  I am just happy to be here, in the presence of my family and not in hospital. I am healthy and grateful.  

Being ill now has a slightly different meaning, but by no means will it go away. I will always have issues but I am learning to be better informed, take more of an interest in my body and respect that my IBD will always be around, it would be cured. Accepting 'my fate' hasn't been easy but I am not fighting against my body. I am fighting to save it from being or getting worse. 

Each day is one more chalked up for a win over my illness. Every. Single. Day.  For both my ostomy and my IBD, each day is a learning experience. There isn't always something to battle or to win over but it is one more days with my illness than without it. 

I am here despite having a chronic illness. I am here because I have an ostomy. I am so relieved that I am. 

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Please, Just Repect my Decision, OUR Decision

When I turned sixteen, I announced to my best friend that I wasn’t going to have kids. It was just something I wasn’t interested in; becoming a mom, raising children wasn’t any part of the life I had planned for myself.

She laughed, quite amused by my statement. How can you know that at sixteen?! She asked me, confused. I bet you change your mind. In fact, I bet you’re the first of us to have children, Lou! I told her I wouldn’t, I would make sure of it. I was a foolish sixteen-year-old.

So, off I went to university two years later, fell in love and started feeling that maternal instinct pulling at me inside. Did I want to have children with this person? Was he the right person to start a family with? Could this – our relationship – work in that way? It turned out it couldn’t, but that is another story for another day. The thing is, those warm, fuzzy baby feelings bubbled under the surface for a long time after we broke up, long into the years that followed until my world was rocked by my Crohn’s diagnosis.

Let me preface this next ‘chapter’ by saying that having IBD does not hold anyone back from having children. It does not mean you pass it on to your offspring, nor does it mean that they are affected by your medications or surgeries. They just have to be planned, that is all. And I commend anyone who has children and has IBD. That must be one heck of a struggle some days.

Having my Crohn’s diagnosis wasn’t the first one I had encountered. I was almost seventeen when it was confirmed I had PCOS – Polycystic Ovaries Syndrome – meaning I have very erratic or none-existent periods and it could be very difficult to conceive a child. Of course, being seventeen I wasn’t interested in fertility rates and future treatments for conception; that for me was either a very long way off or wasn’t going to happen. Excellent, one less thing to worry about I thought. 

So, considering all this, I decided quite early – probably on one of those long afternoons whilst in hospital isolation, a few months into my Crohn’s adventure – that I was back on the no-baby bandwagon. For the most part, I’ve sat there alone; not a lot of people willing to share my views.  But it’s an opinion and a decision I am open about and my main reason behind it is because I don’t want to be a sick mom. There is no guarantee that any medication I tried would get me into ‘remission’ nor would it hold long enough to conceive, give birth, and raise a child. And despite doctors’ best efforts, I continued to get sicker and sicker as the years went on, I tried more and more medications to help me just live my own life. I couldn’t have imagined what that would have been like with a husband and a child. I am lucky to have found my current partner, given the circumstances. And the guilt I’ve felt already about being chronically ill and needing help; the pressure of me being unwell has put on my family, my partner and trying to continue to work, has only solidify my choice to not want to have children.

Selfish, I know, right?

Well, no I don’t think so.

It’s my body and I can choose not to have children. My partner feels the same way; it is one of things we  agree on 100%. Our life together with my incurable illness is more than enough, thank you!

So, imagine my shock when, in the months that have followed my ostomy surgery, I find people asking me when we will start a family.

Why is there an assumption that because I am well again now, that we must procreate? It hasn’t even been four months into this recovery and yet people want to discuss my womb like it needs to be filled pronto by life!

Why is there no respect for the decision we have made together as a couple to not have children?

I am surrounded by baby stuff these last couple months; as my brother is becoming a dad in the Spring, making me an aunt. That is all great news and I’m completely excited for them, but I am filled with anxiety. What if I change my mind and do want children? Is this why my Crohn’s got bad enough to need my ostomy to make me realise this? Or am I just clutching at straws? Would I want it? I feel pressure to be ‘normal’ and want to want to have children because it feels unorthodox to be against procreating. There is an expectation from both my own and my partner’s family to have a child together; give them grandchildren. If anything, that makes me feel more guilty for being sick and that being my life, my world, my future.

My life. My world. My future.

Is that for me to decide...?

Yes, my ostomy surgery has saved me from a life of pain. But it has not changed my view on having or wanting children. The freedom that I now feel because of my ileostomy isn’t making me pine for a baby of my own, it makes me want to go out and do new and exciting things. It makes me feel grateful for my body, the way it now is. It makes me realise that I have been through plenty already, I just want some normality for a while. And normality should be buying a house, living with my partner, having a couple of dogs, and enjoying being together. That’s what I want for my life.

Despite everything being different, I feel the same as I did twelve years ago. I now feel like I can achieve that.

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Remaining Positive in the Face of [Chronic] Illness

Once the battle of being diagnosed with an illness, be it chronic or not, has passed – with elation, fear, and exhaustion – it is not long before the next battle comes.

For me this was “finding my feet”. I spent six weeks or so in hospital over the space of four months, as we sorted out my medications and relieving my symptoms. Once I was on an upward path, everyone began to tell me this little nugget of wisdom:

“You've got to find the positive strength to get through this”

Hear it a few times, you take it on board and try your best to be positive. All of the time. But you forget you are fighting your own body, draining yourself of important and fundamental energy that healthy people just don't need to do or even contemplate doing. And on top of that, you feel somewhat hard pressed to be positive. Even when things go wrong. When your meds start to make you feel worse, you try and ride it out and hope it gets better; you don't want anyone to think you're not being positive about this terrible illness you have.

I tried about five medications in those early days without success. In this period, I hid away from people, quite easy when you're stuck in hospital. On those multiple admissions, my doctors tried hard to figure out what was now causing me a problem, a pain, a side effect; just why I wasn't getting any better. Then I received funding for a biological drug called Humira and it seemed to change everything. Once I could do my own injections at home, I had my disease staged with a MRI scan and I went back to work. This is when the big ‘push’ of practically everyone I saw telling me “how brave I was” and how it was “important I just tried to be happy and remain positive” throughout all my “bad spells”.

I didn't have bad spells.
I didn’t feel particularly brave.
I wasn't happy AT ALL.

This was the start of 2012. I was trying to find out who I was in a time where everyone wanted me to be happy that I was alive and well.
My bad spells were masked by my medication. It helped me a great deal but it didn't fix me. It certainly would never cure me and I still felt awful a great deal of the time.
My bravery? I was utterly heartbroken as I mourned my old, wonderful, normal life that was now just an endless barrage of tests, managing my diet and tracking symptoms. Being in hospital for so long, being so unwell, made me paranoid about when I actually did feel well – Me? Well? Something must be wrong! Ensue panic!

I just wasn't happy at all. I struggled to find my own new identity in being sick. I couldn't deny what I had or the simple fact that I had it, so I sat and thought long and hard about what I wanted to do. What I wanted to be, who I wanted to be. I read books, articles, spoke to other patients, confessed a lot to my counsellor and slowly I came around. But I struggled a great deal – and to a certain extent, still do – with being told to “be happy”. I don't think it's necessarily that simple, nor is it that easy to do. And why can't you have some time to be angry about things, about this type of thing?

It is not easy to be happy all the time. It is incredibly hard and draining to be positive all the time. I appreciate good advice but not when it is being constantly rammed down our throats; from doctors, medical staff, loved ones, it’s all said with that compassion that leaves you feeling grateful, although through gritted teeth. I don't feel as if I can be unhappy about my health. Especially now in my current situation; going through two major surgeries in four months, coming out with an ileostomy and a forever changed digestive system. Let alone how my scars and my actual ostomy makes me feel and look. I can't always be smiling about it. I need to be angry, some times.

So, remaining positive; harder than it seems. More complex than first meets the eye. Not always for the best.
Please, let us be negative and grieve for a while.
Chronically ill people are the strongest and most resilient people I know. I'm sure that's not just down to being positive, they get angry too.
Let us. We always come back to being happy and finding the funny side. Especially when it comes to bowels!

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Taking my Stoma to the Spa

I love a good spa day.

Swimming, a steam, hot tub, a treatment and being pampered in a robe and fluffy slippers. My idea of heaven.

Over the years I've found being in a relaxing environment such as a spa very much help me with my mental health and give me some much-needed reflective time alone. I tend to ask for them as gifts for Christmas or birthdays so, that every year I get at least two days of rest and relaxation. This year I received one but had to reschedule it three times due to Crohn's flare ups, surgeries and hospital admissions. Finally, during the end of my recovery from this surgery, I went.

Let me tell you, my body is different now that I have an ostomy bag stuck to my belly. I also have a wonderfully pink 5 ½ inch midline scar and a couple laparoscopic ones on my left side too. But I wanted to be brave and ‘show off’ my battle wounds. I brought a new bikini – a somewhat impossible task given it was September – and took the plunge.

This is me:

I am not perfect. I don't think that my body is where I would like it to be, but look at that scar! It's not all of it, nor is all my bag on show but those two things remind me I am still here. That I have fought my disease and came out the other side.

My writing and my words might make it seem like I am confident and slightly eager to flash my recent surgical scars but I am a shy individual; hardly every comfortable in her own skin. With my weight gains and losses over the years as I battled this invisible illness I have; I’ve loved and hated my body. This disease has given me the typical mooning of my face, the swelling of my belly, shrinking thighs and loss of my buttocks; I’ve grown accustom to these over the years, but the scars from someone cutting into me – surgical intervention - still shock me. If I am truly honest, not wanting those scars was a big factor in why I always tried all the medications. Why I always put up with the side effects from them too.

I don’t want surgery or my ileostomy to change what I do or how I am.

I walked into that changing room, took my clothes off and put a bikini on. Acted like my scars and bag were not there. If people stared, let them. I wasn’t looking for their acceptance. I was looking for my own.

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Hitting the Wall (of Denial and Regret)

I think like most people, I am guilty of living in some denial and regret in certain aspects of my life.

When it comes to a chronic illness, it's just that CHRONIC. It doesn't go away, it can't be cured only treated and those treatments change and sometimes fail. It takes time to become comfortable with what you have, what is wrong with you and how you go about living with it.

I've always embraced my illness. I figured the sooner I accept it, the better I will feel right? I was half right. Whilst I did accept my illness and how it was going to always be in my life, I didn't always like the fact that it was always going to be in my life.  It's difficult to come to terms with that; the long term, chronic part of IBD. Not that any physical aspect of my illness is particular pleasant but it's the people I've met; the resilience, bravery and positive humour they show that keeps me going; it's what I strive to emulate.

So you get use to denying how you feel. You tell your doctors you're happy to go ahead with new treatments when previous ones fail: because your body is immunosuppressed or it's just plain useless or has it in for you. You don't tell them that you're angry that this condition picked you – because it's not genetic, I didn't give myself this illness, ITS NOT MY FREAKING FAULT! – or that you're tired of them trying new treatment after new treatment. You hope and pray every time you do start a new treatment or drug that this is the one that works. That it is the one that gives you some relief from the pain and / or symptoms you're experiencing. You hope you don't live to regret your decision to take harsher and more potent medications.

I don't support this living in denial or the regret of what could have been, I try to live in the moment and remain positive. I did this more than ever during my most recent hospital admission where they ended up taking my colon and giving me a ileostomy. But even with that, I have to talk myself into believe I made the right choices and I am happy with how my life is being lived. For the most part, I convince myself of this. I accept my reality and move on, do all those things a ‘a normal and healthy’ person can do.  But even I have my limits. And my triggers.

One is my actual supply of ostomy appliances. Their smell fresh from the box reminds me of all that I have lost and what I need to do for the rest of my life – change my appliance every other day and empty it 5-6 times a day. It doesn't hold me back but it makes me stop and think, I remember living with a colon for so long it's still very odd to not have it. And once my body is healed from this surgery, will my mind be healed? I doubt it. It is so very strong my doubt; I deny myself the feeling that this is not okay and that I'm only 28 for Christ sake! This is new and scary and I don't know how long that feeling will last. So I push myself to be okay with it all, not deal with the fact that I am scared because I've faked being okay with this to every one: I don't want to let them down, let their opinion of me change, of not being so brave and courageous. I don't want to be a failure to them.

 I will occasionally have moments where it is too much. And learning how to deal with them is an uphill struggle, a steep learning curve. But that is okay. I need to hear it's okay.

But.. I wouldn't want to live without my denial or regret. I think those two emotions keep me fresh. Let me explain; if I didn't feel a small twinge of regret and what if and wondering why I was still in agony, I  would never have sought medical attention in August and my diseased colon would have killed me. There is no one set way to solve the problems that arise with IBD and every patient is different, even though we do follow certain patterns. If I didn't suffer with some sort of denial; I wouldn't be human. I would be a robot.

Sometimes you just need to be reassured that feeling those ‘negative’ emotions is okay. It's a part of life, a part of being a human and it's part of this recovery. It keeps you soft in world where it is so easy to be hard and cold.

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One Step At A Time

So you all read this post, right? Where I explained how my entire life has recently been turned upside down and I had to go from being really active to barely able to walk for five minutes without dying. It's been tough. Emotionally and physically for me. There have been times when I've wanted to just give up on trying to be better and just stay in bed all day. Times when I've felt guilty for not being able to walk up the stairs and having to take the lift, guilty for asking someone I'm with if we could slow down or stop because I felt unable to carry on. 

I have also spent a lot of time wondering if I'm making a big thing out of a small thing. That maybe I am just unfit and causing a fuss.

And I keep going back to that thought.

Over and over again.

And it is because I am starting to get better. I still am nowhere near where I was. I am still scared of even trying to work a full time job and there is no way I could walk to and from work or go out jogging again but I am not the same person I was in January wherein I had to spend days in bed to recover from small activities.

So because I'm getting better, and I'm starting to feel better. I wanted to just write a quick post on here to tell you about some of the things that I've achieved lately that I've been proud of. Things that seven-eight months ago, I never would have managed. Because then I can show to you and also to myself, that I am on the road to recovery. I may never get to where I was but if I keep working, I might get somewhere near to it.

1. I can climb the three flights of stairs at work without crying out in pain.
2. I can walk for a good half hour before I need to slow down.
3. I can carry heavy piles of books and/or bags again
4. I don't feel as achy when I wake up in the morning
5. I don't feel as achy after driving for 30minutes.
6. Yesterday I climbed the equivalent of 15 flights of stairs and while I was out of breath, my legs and hips did not hurt until 4 hours later. Which is unheard of.

Of course, with all those amazing achievements, I still have things that I do now or cannot do now that I used to be able to, such as:

1. If I've been driving for a long time, my left arm is more comfortable in my lap then on the steering wheel, giving my muscle a break.
2. I still cringe at the idea of running and how much my muscles will hurt me for the task.
3. If I don't do my physio exercises, I can struggle to get out of bed.
4. I am still incredibly exhausted most days.
5. When I have done too much, I can barely get up out of the chair as I hurt all over.
6. I'm still getting bizarre and annoying pains in my fingers and knuckles.

I am not 100% okay but I am better than I was and I am so happy about it. If I could get to a point where I could job for 10mins once a week, I think I will be happy with life again. That is my ultimate goal and I am going to make it. I'm sure of it.

It's all just about taking it one step at a time.

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