Tag Archives: university

#RABlog Week Day 3 – How my condition affects me

The third prompt for #RABlog Week is “Explain your RA”. Technically I do not have RA, I have another joint condition caused by my immune system attacking my joints that hasn’t yet been identified. I can’t explain what exactly is going on because I don’t know that myself but I can explain to you how my condition affects me, and how it makes me feel.

When I was diagnosed back in November I wasn’t ready for a diagnosis. I had gone for 7 and a half years with everyone telling me that they believed my pain but no one could tell me what was going on. I remember asking my Rheumatologist in despiration if she has ANY idea what was going on… her answer was “It might be autoimmune, it might not be. I do not know what is going on with you”. That was what I was told when I was 14. I wanted to cry, I was so frustrated at my body, at being sore all the time. I found it hard to explain what was going on to people because I didn’t have a diagnosis so I felt as if I was a fraud. Other people would go to the physiotherapist because of a sports injury and they knew how to treat it, I would go and they would say that they would try a treatment… but when it didn’t work I would get passed to a different physiotherapist. I saw 6 different physiotherapists in the space of 5 years. That is a lot of physiotherapy, and it is a lot of specialists who couldn’t help me, even though they truly believed I was telling the truth. They would all look at me with really sad eyes and tell me that they were sorry they couldn’t help, and that I should see my rheumatologist again. And every time that happened, any hope that I had built up was gone again and I felt really alone.

I felt that people would stop believing me because I didn’t have an answer for what was going on, and apparently no one else did either. So when my Rheumatologist turned around to me and said “I think you have an autoimmune condition, I want to start on you Hydroxychloroquine” I didn’t know whether to cry with happiness because I finally had an answer or to cry because I had found out that what I was hoping wasn’t true, was true.

As I said before, we haven’t quite narrowed down what condition I have. There is speculation that I could have Lupus or Mixed Connective Tissue Disease… or I could have Psoriatic Arthritis or Seronegative RA. We haven’t worked it out yet. I personally believe that I could have something similar to Psoriatic Arthritis or Seronegative RA due to my negative test results and the inflammation in my ligaments and tendons… and more recently, the whole finger that swelled up for 5/6 days for no reason [AKA dactylitis, although I need to get that confirmed by my rheumatologist]. I am lucky that I am studying physiotherapy so my lecturers understand what sort of problems I may have at uni but the problem with not having a name for my condition means that I can’t tell them straight out what I have and then have to explain the whole “I’ve been diagnosed but they haven’t said what it is yet… because I am a mystery to my rheumatologist”.

Of course all that emotional stuff stems from how my condition affects me physically, and also partly on how other people treat me because of my condition. If you look at me you cannot tell that I have a joint condition. If you had a line up and you had to choose someone who you thought was chronically ill, I very much doubt you would choose me. I look healthy… and to some extent I class myself as healthy but if you read my medical file you would probably picture someone who is unhealthy. I want to quote some things that my rheumatologist has written about our meeting and I want you to try to think about what a person with these ailments would look like.

“Lumbar sacral spine movements were grossly restricted”

“… restriction of plantar flexion subtalar movements and mid foot movements” [AKA restricted movements in my feet and ankles]

Morning stiffness remains a significant problem and can last between 1 and 3 hours”

“…feels extremely tired”

“… grossly restricted movements in neck and back”

If I saw a description of this written down I would expect to see someone who probably wouldn’t be very active, and probably wouldn’t be able to move very well because of all the stiffness. However, that is not the case. I am active, I can run, I can jump… Some of the time that is. And this is the thing with chronic invisible illnesses of an autoimmune nature, sometimes you can feel really good and the next day, or even the next hour, you can feel absolutely horrendous.

There have been times that I have used a disabled toilet because of the fear that I wouldn’t be able to get up off of a normal toilet without handrails. There have been times where I have sat in the disabled seat on buses because my joints couldn’t cope with me standing any longer. There have been times where I have been physically sick from pain. There are days where I can’t write, or when I find it hard to type. What I want people to learn from this is that living with an illness is very unpredictable and you have little control over which days you feel great and which days you don’t. I deal with pain, swelling, stiffness and inflammation every single day and yet some days I can still be “normal” whatever normal is. The point is that you cannot see my suffering so just because I don’t tell you that I am sore doesn’t mean that I am pain-free. Please remember that your sister, brother, parent, friend, relative, colleague… who ever you know with RA/Autoimmine arthritis, will most likely be sore every day and have symptoms every day. Just because you can’t see them, doesn’t mean that they aren’t having problems. If they are doing things slightly differently to normal then this is probably them compensating for said symptoms in a functional way… they might even ask you for help. Don’t make a big deal of it, just help them. Don’t treat them any different to normal, they are the same person they have always been. They do not need to feel more isolated by their illness because you feel the need to make a big song and dance about what they can/can’t do or what they may/may not need help with.

#RABlog Week Day 1 – A day in your life

So today is the first day of #RABlog Week where a group of bloggers from around the world come together to share their experiences with RA (or an autoimmune joint condition, in my case).

I have decided to show you a day in my life through pictures… Much like how I used to do 12 of 12s.

  
12.38am… I’m in my room and really struggling with the effects of painsomnia. Last night was actually the third night in a row where I didn’t get to sleep until after 3am. 

  
About 3am… At this point I gave up trying to sleep and took some more Paracetamol and watched Netflix until it had kicked in a bit.

  
6.30 I wake up half an hour before I need to get up so I can use my heated blanket on the parts of my body that are particularly stiff. This lives next to my bed so I only have to grab it and plug it in on a morning.

  
7am… I wake up to this quote every morning. It reminds me to appreciate everything that I have got. 

  
7.30am Morning meds. I’m lucky that my morning meds only consist of 4 medications (I take Seretide for my asthma, which isn’t pictured)… I should also point out that you are supposed to eat food before taking these but I find that I feel very nauseous if I do that, so I eat food about half an hour after taking my meds. I DO NOT SUGGEST THAT YOU SHOULD DO THIS, THESE MEDS ARE HARSH ON THE STOMACH AND SHOULD ALWAYS BE TAKEN WITH OR AFTER FOOD.

  
10.00am… It’s a practical day at uni which means I’m kitted out in my shorts and T-shirt. At this point I was wondering whether I should wear my ankle brace because my ankle was already causing a lot of bother.

  
10.45am. I’m almost at Uni. It takes me 50mins to walk in even though most other people can do it quicker. Where I live, walking is the fastest way to get to Uni, although there is a metro station near-by that I can get when I am really stiff and sore. 

  
 
I actually took this screenshot the night before but this shows my classes for the day. Thankfully there was nothing too challenging and we learnt about pain physiology which was pretty cool.

  
6.30pm – sitting at the pharmacy. I had ran out of naproxen and paracetamol (I get paracetamol OTC but they put it in the prescription bag for me). I am so thankful of the pharmacy having chairs I can sit in as there are always problems with my prescription.

  
8.00pm – Doing a re-cap on today’s lectures/seminars/practicals… It’s actually amazing how much I can relate to what we learn about pain. “It is possible to have pain and no tissue damage, and it is possible to have significant tissue damage with no pain”

  9.15pm – I have a shower every morning and night as I find that this helps the stiffness and pain in my joints. You can see that I live with a lot of people from how many things are in the shower. 

  
9.30 – after a shower I usually try to do some gentle stretches to maintain my flexibility. You can see here that my knee is slightly swollen which means that stretches on this leg are difficult. I am very scared of loosing muscle mass and even more scared of the possibility of contractures so I try to do these stretches every day. I’m hoping to start yoga soon.

  

9.45pm – back with the heat blanket on my ankles… I am really regretting the fact that I didn’t use an ankle support today but everyday with a chronic illness is different, so I guess I will learn to take my brace with me to use if I need.

  
10.55 – Night time meds, this time with Seretide included.

It is actually quite hard to document a day in the life of someone with an invisible chronic illness through pictures… You cannot see how I had to hobble out of bed, or how I struggled to get off the toilet or how tired I am. To an outsider I look completely healthy. The fact that I wake up earlier than I need to so I can get my joints sorted enough to walk to uni doesn’t cross most people’s minds. Unless I tell someone that I am sore, it is hard to know that I’m struggling. 

I also didn’t take pictures of the paracetamol or voltarol that I use throughout the day because I don’t want my day to revolve around medication. I managed to walk 6.2 miles in just over 15,000 steps which I am proud of. I try to celebrate my successes, no matter how small. And if I fail at something, or don’t do as well as I was supposed to then that is okay too, as long as I did my best.

Sickness and the joints

This is the first time since October 2013 that I have called in sick to college/uni. I’ve been feeling ill for a few days and then things stepped up on sunday/monday. I woke up and couldn’t swallow because my tonsils were so sore and swollen. I had been up most of night with hot and cold sweats, I had a pounding headache and to top it all off my joints are playing up too. I feel kind of like a phone calling in sick because I was only in for another 4 hours this week but I really just couldn’t handle it.

I had a dentist appointment on Monday so I went to my lecture at Uni since it was only an hour and then headed home to the dentists…. Apparently my jaw doesn’t move smoothly on the right side but we reckon that’s because I grind my teeth rater than from my immune system attacking my jaw since I don’t tend to get much stiffness in my jaw, so I got measured for a mouth guard to wear at night. I could have headed back up to Uni after the appointment but I decided to stay wit my parents because I was feeling run down and I didn’t want to give it to the other girls in my flat, especially because we have an exam next week. And staying at home also means I can sleep in my own bed which is kinder to my joints than my Uni bed.

I get colds all the time and it really doesn’t do anything good for my joints so I am definitely going to mention this to my rheumatologist in March.

Hopefully this virus will pass quickly! But on the bright side I have only missed 4 hours of uni. However I am annoyed that it has come to this since I managed to go to college when I had a grumbling appendix, and I still pushed myself to Uni when I had my chest infection without pushing myself too far. I think that I am learning my limits and learning not to push them when it comes to sickness. This is a learning curve.

Freshers’ flu

So I am heading into my third week at uni and so far it has been a blast. I have made new friends, and [thankfully] I have settled in really well. I am quite lucky in the fact that I have always been very independent and I was ready to move out, so this transition, though scary as it was to begin with, has actually been really good for me.

I have been going out a lot with my flatmates and other people on my course, and it has been excellent fun, although it has been very tiring, especially for someone with [self diagnosed] insomnia because I can’t sleep during the day unless I am ill, and I wake up early on a morning so my average hourly sleep was about 4 hours during the first week of uni… Thankfully now it has increased to about 5 or 6 so I am not constantly knackered. However, the lack of sleep in addition to mixing with new people, living with new people, and partying a lot made me more vulnerable to illness and I have ended up coming down with what only can be described as, the dreaded, Freshers’ flu…

It all started last Saturday when I was feeling a little bit off, and I didn’t really want to talk to anyone or to eat anything. I kept getting spells of being boiling hot then freezing cold… but I decided that I would be fine and I went out that night anyway. BIG MISTAKE… Those of you who know me, will know the details of the events that night but for those who don’t, lets just say that you should try to think rationally, and be responsible even when you are drunk. I did a stupid thing that night that very nearly put me in hospital and it ended up with my asthma control being chucked out the window. Every since then I have been fighting to get my asthma under control: bumping up my Flutiform to 3 puffs twice a day, then up to 4 puffs twice a day [so I was essentially taking the equivalent of 20 puffs on the brown Clenil inhaler]… and I was still needing quite a lot of Ventolin throughout the day. Being the person that I am, I figured that I could cope with it and that I would be fine after a couple of days, which I was also wrong about. I had a constant temperature from Saturday through to Tuesday, my asthma just didn’t get better [but it didn’t get worse either, thankfully] and my usual asthma cough became a lot deeper and very productive… essentially I developed a chest infection.

I am registered with a new doctor up here, but I didn’t think I was bad enough to go and see what they said because I have had things like this before and I have always gotten over them after a few days. I spoke to my Mum and she agreed that I should wait and see what happens. Well it got worse, thats what happened. I woke up at about 3am on Tuesday feeling sick to my stomach and wheezing up a storm. I was incredibly short of breath and coughing up massive amounts of disgusting stuff [sorry if that was TMI] and my chest was really tight. I was feeling so ill that I couldn’t even stand up and I had to crawl to the bathroom, which thankfully is only a metre or two away from my bed. When you feel that ill and you have a temperature it is very difficult to think clearly and it is also very difficult to stay calm… my initial thought was that I needed an ambulance, but then I thought that I was so out of breath I probably wouldn’t be able to speak down the phone, so my next thought was that I needed my inhaler… Thinking back, I don’t think I was ill enough to need an ambulance, especially as I hadn’t actually tried my inhaler and in pure panic had crawled straight to the bathroom… My inhaler did work after quite a few hits, I stopped counting after 10 but it was definitely under 20 puffs total and my lungs were responding. Then I thought that I should tell my Mum to come and pick me up and we could go to urgent care to get some antibiotics, but then I figured that since I was breathing a lot easier I could wait until the morning as I didn’t think that Mum would appreciate the wake-up call… but thinking back, that was probably a bad idea as no one knew that I was feeling so ill. Somewhere in that situation I briefly thought of crawling down the corridor to wake up my flatmates so they could get help… but I decided against that too. However, if this ever happens again [and this is advice to all of my readers too] I definitely suggest that you let someone know, because things might not turn out so well… And generally when you are thinking you need an ambulance, you do need one.In the UK there is a service that allows you to text the emergency services if you are in a situation where you find you cannot speak for one reason or another, however you do have to register your phone first before you do this. [PLEASE SEE HERE FOR DETAILS]. I am actually kicking myself looking back because I should have told someone but my brain doesn’t work that well when I have a temperature and so I didn’t think clearly about what could happen.

It’s over a week since I first got sick and I am improving dramatically… The secretions in my chest are a lot thinner and easier to move when I cough although, I am still coughing more that I would like to, my wheezing has been at a minimal for the last couple of days, I am sleeping a lot better, my temperature has been normal for quite a while now except from a little episode yesterday. On the whole I am feeling significantly better, but I would not like to repeat any of that again.

A busy few weeks

My life has been pretty hectic recently. I found out I was going to go to university about a week ago (on the 14th) which I really wasn’t expecting based on how I thought my exams had gone, so I hadn’t bought anything that I needed. For any of you who have moved away to go to Uni, you’ll have some idea of what it is like to find out that you have to get 6 freaking pages of stuff [i.e student essentials] in 4 weeks… and for those of you who don’t it’s super stressful, exciting, nerve-wracking and really expensive! This week I have had to pay out over £500 for necessary things including the deposit on my accommodation, the gym, Uni essentials including pots and pans, bedding, towels and bathroom stuff, and my Gym membership. It’s been crazy expensive week, but thankfully I think I have got almost everything I need to move out, so the next few weeks shouldn’t be that expensive. I have a new found respect for anyone who has ever had to move out and get new stuff because it is far more difficult than I expected!

I am also happy to report that I am back on track with my asthma meds… I took an impromptu break from Flutiform and relied solely on Ventolin for a few weeks which was a stupid thing to do and was a result of the massive amounts of stress I was under from certain events going on in my personal life… I have now either resolved or come to terms with these issues and I am feeling a lot happier. However, my lungs are still hating on me for leaving them without a controller med for a while and so I have had to up my dose of Flutiform back to the 125/5 inhaler but I shouldn’t complain because it was my fault. I am hoping that in a few weeks everything will settle back down to normal, but if not I shall just phone my nurse and ask her to change my repeat prescription back to the 125/5. And that has also reminded me that I need to book in for my flu jab! GET YOUR FLU JAB GUYS! There is no point getting ill if there were steps that you could have taken to reduce the risk.

Now onto the hip… I think I mentioned that my bursitis has come back in my hip, or maybe I didn’t. I am incredibly tired right now because I haven’t slept well in about 2 weeks because of my bursitis and it is affecting my memory so I can’t actually remember if I have told you about my hip. So in short, my bursitis came back about 2 weeks ago after no problems since the end of June when I had a burst of pred. There was a few low points last week where I was feeling really sick because of the pain but thankfully I wasn’t actually sick. I am now considering my options for treating the bursitis again and as far as I can tell I have 5 options:

  1. Continue treating with 1000mg of Naproxen a day, and 1000mg of Paracetamol PRN/every 4 hours, and Ice
  2. See my GP and ask about a burst of pred or a cortisone injection
  3. See a private physiotherapist
  4. Phone my Rheumy
  5. Do a combination

So Option 1 is what I have been doing for the last 2 weeks and although it’s preferable to doing nothing, I am still having a lot of pain and my hip is still warm to touch (except from right after I have iced). As for Option 2, I am feeling particularly self conscious about the way I look right now so pred is definitely out of the question but I might be up for a cortisone injection into the bursa if the GP can guarantee that it will at least help a bit. Option 3 is out of the question, but it was something that my Mum brought up in the middle of the night when I was still wide awake and intercepted her on the landing when she was going to get a drink of water… I have looked at the prices of the private physiotherapists around here and they are all far too expensive, and there is no guarantee that it will help. You may be wondering why I didn’t think about NHS physios, and whilst every physio I have had has been awesome, the waiting time is really long and I just don’t have the time, or the patience, to wait. Option 4 was another idea that my Mum had, again in the middle of the night, but since I have an appointment on the 17th of November [the appointment letter came this week, along with a letter saying that I DO NOT HAVE LUPUS] I might just try and wait it out. The Rheumy also said to phone her if I was flaring but this technically isn’t a flare… or at least, I don’t class it as a flare. Option 5 seems like the best option, there is no way I am going to let my GP take me off Naproxen since it’s the first time in years that my joints have felt relatively good, with the exception of my hip, but I don’t feel like I can carry on with just Naproxen and Paracetamol, as much as I hate to admit it, so I guess I might see about the cortisone injection… Especially because I have read that a cortisone injection could “permanently resolve” the bursitis, which after 2 years would be excellent!

I have been planning/thinking about some more posts that I could do and I may have also found another person to write us a guest post, which I am very excited about… and I also need to ask Justin of Haika Clothing to do another interview with me to tell us about the progress he has made [I am currently saving up to buy some more of his awesome shirts, and $5 of every purchase goes to an asthma charity!]. For more frequent updates check out my Facebook page.

University, Flutiform and World Kidney Day!

I have just received some really exciting news. I got a conditional offer from the University of Bradford to study Physiotherapy. I didn’t really think the interview had gone that well, but I kept my mind open and tried not to think about it too much and I got an offer! I can’t actually explain how happy I am, and even if I don’t go to uni this year, I know I still got an offer.

I still have to wait to hear back from the other 3 universities I applied for before I can make a decision about which university I would most like to go too, and which uni would be my back up choice if I didn’t get my insurance choice.

The offer really brightened my day up! Especially since I have been struggling with my lungs so much today. I have a pretty bad cold which kept me up most of the night with the coughing, and I woke up wheezing quite a few times too which I am not so happy about. But I am so thankful that I am actually on Flutiform because I would hate to see what my lungs would have been like if I was still on Symbicort. In chemistry we did an experiment which involved burning matches and that just sent my lungs into overdrive… My lungs were already having issues and after the experiment my lungs absolutely hated me. If you put my hand on my chest, you could actually feel it rattling (more than it usually does) and I think I might have given one of my friends a bit of a shock when she felt my breathing (Sorry about that!). Surprisingly though my peak flow isn’t as bad as I expected it to be, although that is a pleasant surprise.

Although I absolutely love Flutiform, I am struggling with the fact that I can’t increase the dosage when I am feeling rough, like I used to with Symbicort so I am kind of stuck with Ventolin. I had taken a lot of Ventolin today and I was still wheezing which is quite disconcerting when you are in class, and you can’t concentrate on the lesson because you are trying to concentrate on breathing right. Thankfully, my lungs have eased up this evening but they are still pretty tight and I’m still coughing up a storm but I haven’t wheezed since about 3 so I am happy.

I have a pharmacist phoning me on Friday to see how I am getting on with Flutiform so I am going to ask him if you are allowed to increase Flutiform when you are having issues, although I suspect that he will tell me to phone my GP.

Okay so another exciting day is happening this week… IT’S WORLD KIDNEY DAY ON THURSDAY!!!

The World Kidney Day logo is looking pretty cool isn't it?
The World Kidney Day logo is looking pretty cool isn’t it?

So I have fished out my Kidney Research UK T-Shirt to wear on Thursday to raise some awareness… Why don’t you wear something purple on Thursday to support World Kidney Day?

Wake up and be awesome

I must apologise for not posting lately, I’m been caught up with revision. I have now finished all of my AS exams and I have two GCSEs in the following weeks, so that’s not too bad.

My biology exam really did teach me something though, and that was that I should always take my inhaler into exams. I wouldn’t say it was an attack, although I would say that it was getting close. I was getting pretty tight and I was also coughing a lot too (so I apologise to everyone that was in my biology exam that I distracted).

I am feeling like my lungs are rebelling more than they used to, which is probably to do with the exam stress and the change in weather! I mean it is boiling here! Today it’s 19 degrees Celsius, and baring in mind I can’t really function in anything over about 20 degrees Celsius. So as you can imagine, I’m rubbish with heat, I prefer cool climates. Mum has suggested that I should move to Antarctica or Alaska because then I wouldn’t really have to deal with the warm climates.

I have an appointment with my asthma nurse on the 17th so I’m going to be bringing up the issues I’ve been having, namely the constantly low peak flow, and the really painful lungs I’ve been having in addition to the attacks. So I’m hoping that the nurse will have some tips with how to deal with at least some of these things.

I can also now say that I’m 17! I had my first driving lesson in my birthday which was epic. After I had finished my lesson I was stoked, I was pretty nervous before my lesson which is weird for me because normally I’m cool with these sort of things but after the lesson I was amped to say the least. I couldn’t stop talking about it! Although I did find that my joints were bothering me a bit during the actual drive, especially my knee. I have just come out of a flare where my knee actually swelled which is really unusual for me, so I ended up with a bright red knee which was swollen and really painful. But, thankfully, that flare ended before my birthday so I could actually drive.

I was also having issues with the wrapping paper on the presents, don’t get me wrong, I’m really grateful for all of the presents that I got but I was really having issues with the wrapping paper, so much so that I nearly resorted to using scissors to open the cards and the wrapping paper, but I decided that for once I would use my hands to open packets.

So now I’m 17 I’m also allowed to give blood, I just got my blood donation pack in the post, so I’m just deciding on which date is most practical for me. Although I am really excited to be donating blood!

I have also been trying to decide what I was to study at university lately too, and I think I’m pretty settled on physiotherapy. I’ve been in physio for a good 6 or so years now and my main physio has been a great advocate for me, she is pretty inspiring, and so I’ve decided that I’d like to be a physio too. I also saw this quote on twitter which I though was pretty cool, and it reminded me of my physio and all my spoonie and asthma pals: “wake up and be awesome”. That quote brightens my day every time I see it, although I’m not quite sure why.

I went to a university fair in March where I picked up a load of prospectuses that were specific to medical-type courses and this is the pile I ended up going through on Friday:

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So I sorted through all the prospectuses and split the into piles according to the courses that they offer and this is what I ended up with:

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So now I just need to decide on a few Unis that I like the look of, that I can go and visit. It’s all pretty stressful at the moment.