You don’t have to be OK

IF you have a chronic illness like me, you’ll know that one of the most common things people say is “stay positive” or “keep smiling”. This is intended to help, most people are trying to lift your spirits with comments like this, but as many of you will know, it sometimes does the opposite.

I have been dealing with chronic illness for over 10 years now, and I’ve heard just about every cliche in the book. I often have well meaning but misguided advice from people who actually know very little about me or the situation that I’m in and although this is intended as a nice thing, it can become irritating and sometimes demoralising.

For a long time I have struggled with the feeling that I’m failing if I show signs that things aren’t completely rosey, partly driven by the constant stream of people telling me to keep my chin up and stay strong. I’m often told just to keep going and not to worry about anything, to just power through and not let anything get to me. I have often wondered what would happen if I didn’t, what if I sat in bed and cried for a day or if I refused to pretend to be ok when people ask how I’m doing. Well, the truth is, nothing would happen. The world wouldn’t fall down and life wouldn’t stop. In fact, I may even feel better after a day of allowing myself to wallow.

Where’s my point in all this? Well, I have this amazing piece of news – Its ok not to be ok! Yep, you read that right, you don’t have to be some sort of emotionless robot to survive a chronic illness. In fact, its quite the opposite. Having a chronic illness is stressful, it involves a constant stream of appointments, tests, treatments and sometimes life changing decisions. You’re often in high levels of pain, tired or having to deal with the long list of medications and side effects and that’s bound to cause anyone to feel overwhelmed at times. After years of repressing my emotions and acting like nothing ever gets to me I have learnt that it doesn’t do anyone any favours to deny how you really feel. It can be incredibly difficult dealing with constant illness and set backs, especially if people around you don’t really understand what you’re going through.

I’ve noticed a trend of late where people compare me to famous people with illness or disability, I’ve had an alarming amount of complete strangers tell me that if a disabled athlete can run a marathon or climb Everest then so can I. This is frankly a rather absurd way of looking at things. It’s essentially the same as me saying to a healthy person that they should be able to run like Usain Bolt. Disabled athletes/ people who over come terrible illness are amazing and extraordinary, but that’s exactly the point, they are extraordinary because they do things that other people can’t, if everyone was able to do what they do then they wouldn’t be special. I really feel its important for those around us to realise that the smallest things can become huge tasks for us and that sometimes we just need to have a good vent or cry and let things out.

Now, I’m not for one moment suggesting that we all go into a constant state of grief or never smile again, and I’m not saying we shouldn’t try to focus on the good things in our lives as much as possible, but I am saying that we don’t have to hide it when we’re struggling or feeling over whelmed. It’s perfectly normal and even healthy to be scared, unsure or upset when bad things happen. No one can go through life being 100% happy 100% of the time, so its absurd to suggest that people who are dealing with illness or disability will always look at the world in a positive light. There is nothing wrong with reaching out to a loved one and telling them you’re struggling with the pain or feeling deflated by recent bad news, or even if you’re just plain old fed up. You don’t have to constantly make others feel better by acting like there’s nothing wrong and you shouldn’t be expected to never be affected by what’s happening in your life. It’s perfectly OK to have a cry sometimes, it’s normal to struggle and not know what to do or know how to handle certain situations. It’s OK if you need to lean on the people in your life.

Of course, if you’re finding that you’re consistently struggling and not finding any enjoyment in things that usually makes you happy then it may be time to talk to a doctor for some advice as depression is pretty common in people with chronic illnesses and will hit most of us at some time or another, but provided that you’re able to pick yourself back up after a day or so and you can still see the good things that are happening then there’s no reason to be concerned or hide away.

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My experience with Orthognathic surgery

 

So, as promised, here’s what happened when I had my Orthognathic surgery in September last year. This is going to be fairly detailed and will be rather long, but stick with me.

For those who aren’t aware, orhthognathic surgery is sugery to create straight jaws and is used to help correct the bite of people who’s jaws aren’t lined up correctly. In my case, my bottom jaw didn’t grow enough and it left me with a significant under bite. The surgery corrected this by pulling my lower jaw into the proper position.

Here’s me before the operation

before-op

before surgery

Before surgery could happen, I needed to have fixed brace treatment to get my teeth into the correct positions so that when my jaw was moved I would have a good bite. I had fixed braces on for just over 2 years when I had my operation. My operation took place on September 15th 2016. During the operation, they used controlled force to break my lower jaw and pull it into the desired position. They then fixed my jaw into place using metal plates and screws. These will stay in my jaw for life unless there is a problem with infection, they also removed my wisdom teeth and one other tooth to make sure that I wouldn’t have a problem with my teeth grinding together or not being able to close my mouth.

I woke up in the recovery room with an oxygen mask and a nurse at my side. The pain was severe, so she gave me some IV morphine  in small amounts until it became bearable again. Once the pain was under control and I was more awake, I was taken back to a ward to rest and recover, here I received IV steroids to help reduce the post op swelling, IV paracetamol to reduce the pain and some anti sickness. Usually people are given Ibprophen but due to my Crohns disease this isn’t suitible for me, so  this was substituted for small amounts of oral morphine. I was very surprised to find I could talk pretty clearly once the anesthetic wore off and that with some effort I could sip water from a glass.  By tea time I was feeling well enough to have some Icecream and even had a coffee (not too hot though as I was very numb) . My surgeon came to see me and was very happy with how I was doing, he told me he was happy to let me go home if I wanted, but the nurses felt that it would be better for me to stay in over night and continue to have the IV paracetamol as I was experiencing severe bursts of pain , she also wanted me to be monitored as I was spitting out quite large amounts of blood and she wanted to make sure this stopped.

The first night after surgery I didn’t really sleep and but the next morning I had a large amount of swelling in my lips and cheeks, and found it very difficult to open my mouth. I was instructed to bath my mouth using the warmest water I could stand and cotton wool, and this helped to release my lips and get my movement back which then meant I was able to drink and talk much more easily. Before I left the hospital I recieved two doses of IV anti-biotics and was instructed on after care. I was given an anti-septic mouth wash to use four times a day and was told to bathe my lips as described every morning. I found this process quite painful as when I did it some of the skin on my lip would be pulled off, making my lip bleed, but it was worth it as every time I did it my movement got a lot better. I also had to smother my lips in vaseline to try to stop them drying out and sticking together. I was also given some exercises to do which would help my lips learn to close again and improve my movement.

 

Here’s me the morning of my surgery and 24 hours after.

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I was discharged from hospital about 5pm the day after surgery and the first night at home was quite interesting. I found it very difficult to find a comfortable position as laying flat was causing a lot of pressure on my face because of the pressure, it was also causing the pain to increase. In the end I built up my pillows so that my head was elevated and we folded a blanket under my head so that I was sleeping against the soft fleece material.

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Missing in action

Whoops. I can’t believe I haven’t posted anything since July! It’s been a crazy few months and the time has flown past me so I’ve been a little bit AWOL. Here’s an update on what’s been happening.

In my last post I explained I had an allergic reaction to Inflectra and had to be taken off the infusions, so we were discussing my next options treatment wise. It was decided that the best option for me would be a different infusion treatment called vedolizumab (Entyvio). Unlike Inflectra and Humira, Entyvio is gut selective, so it only works on the white blood cells that are entering the gut and therefore your immune system isn’t quite as widely suppressed. The downside to this is that it takes a while longer to have any noticeable effect. This is because it can only act on the new white blood cells going into the gut, the cells that are already in the digestive tract have to die naturally and this takes about 14 weeks, during that 14 weeks the “old” cells are still attacking the bowel and so you still get active inflammation. Despite all of this it was decided that it was the best way forward for me and I was put forward for the next MDT meeting to ask for permission to start.

Just after deciding on a treatment plan, I had an appointment with my Maxiofacial surgeon to discuss my jaw surgery, we went over what he wanted to do during the procedure and discussed my general health, after learning I was in a gap between treatments my surgeon, Mr Jones, decided he wanted to go ahead and get the operation done as soon as possible, so I was given a date for the 15th of September. This meant that August was full of preparation appointments which included having impressions taken of my teeth and gums along new xrays being taken to guide surgery, a splint being made and fitted to be used during the procedure and small metal hooks being fitted to my braces. The day before surgery I had a meeting with the surgical team to go over the surgery in detail and sign all the consent forms and then it was D day. The surgery went well and I’m recovering well, I will go into more detail in my next post as I am planning a specific post with detailed information on my experience.

While all of that was going on, I was given approval to start Entyvio, but it was decided it would be best to wait and start the infusions after the surgery. I was finally stable enough to start the infusions toward the end of October and have currently had two with my third one being next week. It’s too soon to know if its going to work for me but I have my fingers crossed. In the mean time its a case of trying to manage the symptoms as well as possible and taking things one day at a time.

During all of this I have had increasingly bad patches of joint pains and swelling, particularly in my hands, wrists, hips, shoulders and knees. After a few months of putting up with it I finally gave in and made an appointment with a new joint pain clinic my GP practice has started to run. When I attended the appointment it turned out to be with a physiotherapist who explained that he didn’t think what I’m experiencing is fibromyalgia, as that is linked to muscle and connective tissue, not the joints and it also doesn’t cause swelling. He informed me that he thought that it was more likely to be something inflammatory and that there’s a possibility it’s Crohn’s related arthritis. The physio said he didn’t feel he was qualified to go over my medications or change anything, so I was advised to see a GP which I did the next day. My gabapentin has been increased to see if it makes any difference and when I next go and see my IBD nurse I need to talk to her about what’s been happening and see if she thinks its a Crohns related issue or if I need a referral back to a rheumatologist to have a more detailed look into things.

I’ve also been busy with the Christmas shopping, I’m determined to be organised this year and not be wandering around trying to find stuff a few days before. I’m hoping things will settle down very soon and I’ll be able to update much more regularly. Until then, be kind to yourself.

 

 

 

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Topsy Turvy.

So it’s been quite a while since I last did an update on how things are going. That’s because things went a little topsy turvy since my last post.

I was doing pretty well on Inflectra, I had less pain, a good appetite, more energy and even my joints were feeling better, but there was a sting in the tail. When I went for my 5th infusion, they had trouble getting a vien, which is nothing unusual for me, they’ve always found it hard getting blood and cannula access. When they finally got a line in, they hooked me up to my infusion and everything seemed normal, until about 10 minutes later that is. I suddenly felt like my heart was going to beat out of my chest, I felt horrifically sick and dizzy and was very flushed. My mum called the nurse over and she instantly stopped the infusion and gave me a shot of hydro-cortisone. When she did my obs my heart rate had shot up to a huge 160, I was having a big allergic reaction. Sometimes when this happens they can give you an anti-histamine and then restart it slowly, or they can get you back another day and give you a dose of steroids before the infusion starts, but they said my reaction was severe and they weren’t comfortable putting me back on it. It was suggested that my next option may be Humira, another biologic, which works in a similar way to inflectra but they said it was ultimately up to my consultant.

When I went to see my consultant, he said he wasn’t comfortable having me on humira or any of the anti TNF drugs, so he wants to try and get me on a medication called vedolizumab (Entyvio). This is another infusion but it works in a different way as it specifically targets the white blood cells in the gut. It still has a strong immuno-suppressive effect, so I will need to be careful around people with bugs and try and stay away from those with infectious illnesses like chicken pox. Its a fairly new drug and was originally used mostly for patients with ulcerative colitis but it can be effective for some people with Crohn’s disease as well. I was told that this would depend on if I still have active inflammation so we did a few samples. I had a dietitian appointment yesterday and she told me that my bloods are still slightly high and my fecal calprotectin is also still raised, it is lower than before I started the inflectra, but a raised result does indicate active Crohns. It’s now a case of waiting and seeing what my consultant wants to do about it and how quickly.

Its been a rough few months since stopping the inflectra, I have had a lot of pain and been close to having to go to the hospital a few times, luckily I now have good symptom management so I am mostly able to manage those bad days at home. In a strange way it is good to know they have found signs of inflammation, as that can be treated and they can hopefully get it controlled and get my symptoms reduced. If there was no inflammation it would mean my current pain would be caused by scar tissue from previous surgyer and flares, and that is much harder to control.

 

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Who Am I?

I was nominated by a fellow blogger, KingVargr, to answer the following three questions.

  1. What makes you, you? 

I don’t think there’s any one thing that makes me who I am, as that is something I am still discovering and to an extent I think its something we all learn throughout our lives. However there will always be those things that don’t change, and they make us distinctly us.

I am, and always have been, a very passionate person, when I set my heart on something I won’t let it go, I stick with it and see it through to the end. No matter what obstacles get in the way, I will fight for what I believe in and won’t let myself settle. I’m not necessarily an out going person, and people can mistake that for being shy or having no confidence, but I’m simply taking everything in and focusing my energy on what’s important. There is a hidden fire in me that only those closest to me can see, and that fire never goes out.

I’m also someone who will always see the good in people and try to help whenever I can. Sometime’s this causes problems as people try to take advantage but over the years I’ve gained a lot of strength and learnt when to say no. I still look for the good, and try to help others see it in themselves, but I don’t let anyone walk over me, I’m not a doormat. When someone comes to me with a problem, I will listen intently and at the very least offer a shoulder and a hug, even if we’ve never spoken before, or it’s been a while, I won’t turn you away if you’re in need. One thing I don’t do, though, is pity parties, I will listen, I will sympathize but I’m not afraid to give a little tough love when needed.

I would like to think I have gained a quiet strength over the last few years. I’ve had a lot thrown at me and had to make some tough decisions. If you’d told me 10 years ago what was about to happen and how things would snowball I’d have run for the hills, I never would have believed I’d of got through all of that and still be me at the end, but I have, and I will. I have learnt that I’m a very adaptable person who can bend with whatever’s happening at the time. Whenever I get close to breaking, I spring back and fight on. That definitely makes me me.

2. What do you believe in? 

I believe in humanity. I think humanity could achieve so much if we worked together and fought for each other instead of everything being built on opposition and blame. People are very quick to fight and stand up when they disagree with something, but they never see the common ground. At the end of the day, we are all human beings. No two people are the same, and we should stop trying to make people into duplicates. We are never going to agree on everything, we are never going to have the same beliefs as every other person on the planet, but we can look for and build on common ground. Look at all the things that come out of war, all the scientific advances that have happened because of battle, and imagine the progress we would make if we put the same time and passion into being good to each other. Think how many people could be saved from starvation or poverty, think how many diseases we could irradiate with proper vaccination programs.I truly believe this could actually happen, but people need to bang their heads together and work as a human race, spurred on by what they can do together instead of by their differences.

3. Is there something you would change about yourself if you could? 

There was a long time where the answer to this question would have been a definite yes. There used to be so much I wanted to change, both on the inside and the outside. I think its something we all deal with at some point in our lives. Right in this moment though, the answer is no, I wouldn’t.

Everything I have been through and dealt with has made me who I am today. There have been times I have hated being the person I am, because I was tired and drained and needed a break from the pain. In honesty, I still am. I’m currently in constant pain, with no idea if or when things will get even slightly better, and there are memories that I really wish I could erase sometimes because they almost destroyed me. Right now though, I’m at a point where I understand that those things help to make me who I am. I don’t think I would be as strong and resilient as I am now without encounters with certain people or without those days of feeling like nothing was ever going to get better.  Through those times, I have learnt that I can make life changing choices without having to rely on anyone to tell me what to do. I have a 100% success rate at getting through bad days, sometimes alone, sometimes with people around me guiding me through. I have learnt it’s okay to be scared sometimes, and that fear makes me strong not weak as it pushes me on to get out of the situation.

At this exact time I am comfortable in my own skin and confident that I will face and overcome anything that life chooses to throw at me.

Thankyou KingVargr for the nomination. I haven’t chosen my questions yet so when I will make a seperate post and nominate a few people.

 

 

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What I want you to know about Crohn’s disease.

May 19th is world IBD day, so I thought I would share the things I wish people knew about Crohn’s disease and life with it.

It is estimated that at least 115,00 people in the UK are being affected by Crohns disease. That’s 115,00 people living with an invisible, crippling and sometimes deadly condition with no cure and very little understanding from the outside world.

Crohn’s disease can start at any age.

It’s most commonly diagnosed in those who are between 10 and 40 years old, but it can strike at any age without warning. Think about that, it’s perfectly possible for people to be going about normal daily life with no worries and then be suddenly overcome by an illness that will never really leave them again. I’ve met people who woke up healthy one morning, went about their day, and were then had their lives flipped by a whirlwind of crippling pain and emergency surgery. The next person that happens to could be you, or your mum, or dad, or child. Just think about that for a second, and then think about the way Crohn’s has been represented as insignificant and a “bathroom disease” that can be solved by eating salads and thinking happy thoughts.

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To Those That Love Us.

Everyone touched by chronic illness knows that it isn’t just the patients that suffer, the family and friends can be impacted significantly by these illnesses, so this is my nod to them.

Every person with chronic illness understands that it must be so difficult for the people around them, and we know you want to help us but don’t know how. What you may not understand is that you help us just by being there, it’s easy for people who are sick to get left behind or treated differently, when all we want is to be included like a normal human being. Sometimes, all we really need is someone to hold our hand and let us know they will be with us no matter what. We know you can’t make things OK, we don’t expect you to, and we know that when you say “it’ll be ok” it might well not be, but that’s alright too. All we need to know is that we aren’t alone. Come to appointments, look up the conditions we have or research our treatments, ask us what we need from you. Often, just you being there, making an effort to spend time with us and letting us rant when we’re fed up is a massive help.

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