Asthma action plans and vaccinations

First of all, I apologise for not finishing RABlog week… My life is super hectic right now with the uni work mounting up and living with a chronic illness so sometimes it’s hard to keep up with the blog too.

Today I had an appointment with my new asthma nurse to see about getting an asthma action plan. I have found that recently my asthma has been a lot more controlled than it has over the past year and I am having virtually no symptoms unless I am sick… which I was the other week when I made this appointment. Stupidly I hadn’t thought about getting an asthma action plan earlier so I pretty much just survived on Ventolin because I wasn’t ill enough to see the GP or asthma nurse.

This new asthma nurse is amazing. She checked my inhaler technique without my asking [it’s always better to know that you are doing something like this correctly, even if you have been doing it numerous times a day for years] and she didn’t put a huge emphasis on peak flow numbers. My new asthma action plan doesn’t even contain any peak flow readings to work off because my nurse would prefer me to treat based on symptoms and not to get too caught up with readings. She did ask me to check my peak flow a couple of times a week though because this can provide an early warning for whether my asthma is getting worse or not. We also discussed my treatment options. She asked me whether I would want to try the lower dose of Seretide even though when I was on the equivalent dose of Flutiform my chest got bad again… I agreed to give it a go because I really don’t like taking inhalers/medication at all, and if there is a chance that my asthma could be controlled with a lower dose then that would be awesome. I have been given a prescription for 3 months of Seretide 50/25 to take, and I still have 3 months worth of Seretide 125/25 so I have been told to switch up and down in accordance to my new plan. And if I find that my asthma does become worse again on the lower dose then my asthma nurse is happy to switch me back up to the higher dose. She explained that some people need the higher dose to stay stable, and it is better to have he best control possible over asthma than to get caught up trying to reduce the dose when you can’t.

I also got given the flu jab and the pneumonia vaccination… one shot in each arm. Surprisingly the flu jab hurt a lot more even though the pneumonia vaccination needle was larger. I can’t remember if I wrote about my experience with the flu jab last year but I ended up with an incredibly itchy and hot red circle around the injection site last year, which popped up a couple of days after the jab. I have the same red circle at both injection sites this year but the rash came up within an hour of getting the jab. Thankfully it isn’t too itchy right now but I am keeping a close eye on them. I presume it is just going to stay as a local site reaction because I haven’t got any other symptoms apart from being slightly achy which is awesome!

#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 2 – Managing fatigue

The prompt for Day 2 of #RABlog Week is managing RA fatigue… In short I am rubbish at managing my fatigue. I have a very busy lifestyle which lends itself to late nights and early morning starts which little time to nap during the day. I tend to survive on coffee, much like other students BUT having said that, I know when my body has had enough and when I need to give my body time to rest and recuperate.

I try to stay as organised as possible. If you looked at my bedroom right now you would probably think “How the hell is that organised?” which is true because my room is a complete mess at the moment. But I am usually quite good at keeping my room tidy. If I keep my room tidy then it means that I don’t have to do a massive [potentially exhausting] clean out when it gets to the point where I can’t cope. The same goes for my uni work… I try to stay on top of my work load by going over lectures and doing homework when I get it rather than waiting till the last minute and staying up all night writing and assignment. When I first started Uni, I was more interested in socialising than going home and doing my work which lead to me becoming so exhausted that I had no energy to do anything else except work in the end… and I didn’t even have enough energy to do that a lot of the time.

I also try to keep to a healthy sleep pattern so I try to get to bed by 12am and I don’t sleep past 9am at the latest… I try to go for 8 hours of sleep every night although most nights I get somewhere between 4 and 6. Along with this [attempted] healthy sleep pattern, I try to keep my day structured… Not like an army bootcamp where everything is planned to the second, but I try to make sure that I do at least 2 hours of work in the evening so I don’t fall behind, I try to keep to a cleaning rota, I make lists of what I am going to eat and make lunches in the evening so I don’t have to get up early in the morning to make something for lunch. Making lunches the night before has become particularly important now that I am trying a gluten free diet, since I am still not sure what foods contains gluten and which don’t so it is just easier for me to make lunches rather than get something at uni.

Along with sticking to a structured day, I try not to nap during the day because I find it harder to fall asleep in the evening… Obviously if I am so exhausted that I need to sleep then I do, but I try to limit my naps to a couple of hours max. I am not ashamed to admit that there are days where I have been so tired that I haven’t bothered getting out of bed. These days usually occur during a flare, when getting out of bed is difficult enough anyway… so coupled with the fatigue, I don’t get out of bed.

So those are a few things that I do to try and manage my fatigue… Personally I don’t find that it helps very much but everyone is different and I know a few people that this sort of thing works wonders for. I have actually been looking forward to this topic since the prompts were released because I want to see what the other bloggers write and suggest. I’m always open to suggestions.

There are also a couple of other things that I want to point out/make you guys aware of. Fatigue has been linked to the level of inflammation in a person’s body, obviously with RA and other autoimmune conditions, this is higher than in other, more healthy people. It sounds simple but if you can control the inflammation then this is probably a good starting point for managing your fatigue. However, the difficult thing is working out how to control the inflammation in your body. If I had the answer to that, I would be a very happy person… but I don’t so the only thing I can suggest is taking your medications as you have been prescribed them, and to work with your doctors/rheumatologist to try and find the best medication/combination of medications that work best for you. You might want to explore alternative therapies for coping with fatigue, or herbal medicine. I can’t say if that works or doesn’t but if you do decide to go down those routes PLEASE CONSULT YOUR DOCTOR FIRST. I don’t understand how herbal things or alternative therapies work, and you never know some might cause weird side effects so it is best that your doctors know what you are going to do.

Fatigue can also be caused by some deficiencies [e.g. iron deficiency] so if you find that you are becoming more tired than usual, and you aren’t flaring then maybe it is worth getting checked to see if you have any deficiencies… Most deficiencies can be easily corrects and if that is the case then that is great.

#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.

My condition, my decision… or so it should be

I think on this blog I tend to brush over just how much my joints affect me. I am not one to make a big deal out of things, and I don’t tend to complain that much… unless I am really struggling. However, even when my joints are relatively quiet they still cause problems in my daily life. I am constantly worried about doing too much, for fear of causing a flare. I now automatically analyse every task that I have to do in a day and prioritise what I needs done, and what I can do if I have the energy.

It’s been 10 months exactly since months exactly since my diagnosis, and I have just experienced something which is probably the most heartbreaking encounter since my diagnosis. One thing that I am not, is a quitter. I try not to let my joints get in the way of things. I push through, sometimes a little too far, but I do everything I set out to do. So when my lecturer tells me that I can’t take part in a module of my course because of my joints, I literally felt like crying. As part of the physiotherapy course you learn about manual therapies and manipulations which are aimed mainly at mechanical problems… AKA injuries and Osteoarthritis etc. so they aren’t supposed to be used in inflammatory joint conditions. Since I have notified the Uni about my condition, the lecturer for this particular module informed me that I will not be allowed to be used as a model in this module, although I can practice on other people. This means I am a barrier to my fellow peers. I am a problem. And I really don’t want to be a problem. Even though me being a barrier is protecting my joints, I still feel like I should be contributing in some way to the class, but the fact people can’t touch me during this module means that it is going to be incredibly hard to give people advice on whether they are doing things right or wrong, and it is harder for me to be able to perform things correctly since I don’t know what it should feel like.

I asked the lecturer if it would be possible to participate in sessions on joints that aren’t affected but he is scared that it could cause joint involvement in other joints, so I can’t. Even though I am absolutely devastated that I can’t join in… when it comes to my knees, I am really glad that I can’t participate. Even the thought of someone touching my knees makes me cringe. My ligaments have been sore continuously for 2.5 years now and I still can’t bare it when someone touches the ligaments. It’s just so painful… But having said that, I want to be able to participate in the other joints. I want to be able to show my enthusiasm for my course, I want to show that my joints don’t hold me back, I don’t want people asking questions about why I can or cannot participate. Even though this is for my own safety, it makes me feel like an outsider.

My illness is invisible, and even those who know about it don’t know the extent to which it affects me, both mentally and physically. Things like this really make me question how confident I am in my abilities. The choice I usually have on whether I can participate has been taken away, and I really don’t like it. To my knowledge, my lecturers have never dealt with a chronic, inflammatory joint condition so it must be hard to fully understand how much of an impact not having a decision causes. There have been times that my joints have dictated what I can or can’t do, and now I have people telling me what I can or can’t do because of my joints. It feels like I have less freedom than I had. And it makes me hate my joints. I had grown to accept my condition, and now I feel like I am at a point where I cannot accept it any more, and I am tired of it.

I am scared of the future now too. My joints have only caused me to be scared of the future once before, during a flare, but now I feel quite ill when I think about it. I don’t know what is going to happen, I don’t want my joints to dictate what I do, and I don’t want people to dictate what I do based on my joints. The only real control I have over this condition is deciding what I can and can’t do so the fact that it can be taken away is scary.

I have 2 mottos in life… the first is to appreciate everything and enjoy everything you get, because you don’t know when it is going to be taken away… and once it’s gone, it might not come back. Right now, I am really appreciating the control I had… and I’m not sure whether I am going to get as much of it back as I want. And my second one is to experience as much as I can in life… I guess this would be classed as one of the more negative experiences but I am going to try and grow from it. I need to learn to let go of the negative things and focus on the positive things, and this is one negative thing that I am letting go of by writing this post.

#RAblog week, possible dactylitis and going gluten free

It’s been a while since I last blogged and quite a few things have been happening.

I will be participating in the first annual #RABlog week taking place from the 21st-27th September. This is where a bunch of bloggers write posts using pre-selected topics (and some wildcards) to share their experiences with RA… I don’t actually have RA but I do have an autoimmune condition that causes pain, swelling, inflammation and stiffness at my joints and means that I can be treated with the same medications that RA is treated with… My current treatment being Hydroxychloroquine, Naproxen, Paracetamol and Voltarol.

Secondly, I have been having a lot of problems with my little finger this past week… I wouldn’t have thought that one finger could cause so many problems but it has been painful enough to wake me up numerous times a night, even with naproxen and paracetamol! In addition to the pain, the whole finger has swelled up and become super stiff. I am concerned that it is dactylitis (inflammation of an entire finger or toe, usually associated with Psoriatic Arthritis, infection, Scleroderma and Sickle Cell anaemia). Psoriatic arthritis is one of the condition that my Rheumatologist thinks I could have so as soon as my finger swelled up, I became quite worried… The last time I saw my rheumatologist she suggested that my immune system may be sorting itself out but this week of swollen knees, ankle, returned Achilles tendinitis and now this finger accompanied with increased fatigue, stiffness and pain… I’m not convinced my immune system is doing anything except hurting me more.

I have got to the point that I am so sick of being sore and stiff that I have decided to change my diet and attempt going gluten free in hopes that this will help reduce the inflammation I am experiencing. I move back to University tomorrow ready to start my second year on Monday so I am going to start my gluten free diet on Monday. A new year, a new start ey? Sounds good to me! 

My bizarre body

I haven’t posted in a while, I actually don’t think I’ve blogged since my last Rheumatology appointment in July… Sorry about that.

So what’s been happening? Well I think I am starting to flare but I am not 100% sure because it is early days. I woke up on Thursday far more fatigued that I usually am, it was an effort just getting out of bed… In fact it was an effort just having the energy to lift my arm! I am well acquainted with fatigue but this is one of the first times it has affected me so severely. I woke up feeling like I hadn’t slept in a week yet my SleepCycle app showed that I had slept the best I had in days.  

Earlier in the week I had started running again. I didn’t do much (6x 1 min running each followed by 90 seconds walking) but it really took it out of me. My costochondritis wouldn’t let me run for any longer than 1 minute without making me want to be physically sick… So I stopped running. My knees were also aching after the run and on examination I had found that they had both become puffy.  

 Although they weren’t pink/red they were warm to touch and so I iced them and put Voltarol (topical NSAID) on them but I saw very little improvement. They haven’t really gone down all that much since.

Yesterday the distal interphalangeal joint (aka the joint at the top of the toe) of my fourth toe also joined in the fun and decided to swell. I actually couldn’t decide if my toe did look swollen or not because I haven’t really examined my toes before so I recruited some of my expert friends who confirmed that my toe was in deed swollen. [I would post a picture but my nails are in desperate need of painting and I don’t really want to inflict that image upon everyone 😅]. My friend Elizabeth from The Girl With Arthritis suggested that my toe looked suspiciously similar to those of people with Psoriatic Arthritis, a condition that has been brought up as a diagnosis for me. Here is a link to a picture that looks very similar to what my toe looks like. [Note – the picture is about half way down the page, but the page is a good read to learn about PsA].

Apart from my knees and my toe my thumb and PIP (middle joint) on my index finger have been swollen on and off… This isn’t unusual but if you add in my other joints and the fatigue (and of course the increased stiffness and pain) it’s starting to look like a flare. And on top of all that I have a low grade fever which isn’t unusual to have during a flare, but this is the very first time I have noticed it. My temperature was 99.4 degrees Fahrenheit earlier and I haven’t checked it again but I feel much the same so I would assume that I still have a low grade temperature. 

As you can probably tell from what I have written, I am not feeling on top form but I am actually doing a whole lot better than I usually am during a flare so I am grateful for that. I have also been researching supplements that are supposed to be helpful in treating the symptoms of autoimmune diseases so I am going to bring these up with my GP next time I see him… I am not a great believer in holistic medicines but I am more than happy to give them a go as long as my GP/a qualified medical professions familiar with my case/symptoms/condition/me clears me to take them.

 Surprisingly despite this flare my ankle is feeling amazing… This is the same ankle that I have been having trouble with for years but for the last 2 weeks or so it hasn’t swelled up once! I also have very minimal pain from it although stiffness is still a problem. My body is bizarre and I don’t understand it but I am totally on board with my joints feeling better so I am not going to question it! I’m just extremely grateful that I don’t have to deal with a flaring ankle on top of all the other joints and the low grade fever!