Tag Archives: 2015

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!

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#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.

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.

Time for a new Rheumatologist

A while back someone posted on one of the support groups I am a member of asked for people to take pictures of themselves holding a sign with a message they would like to give doctors so that they know how we feel. My sign had a message which said that just because my problem may seem small to you [i.e. the doctors], doesn’t mean it is small for me. When I wrote that I was thinking about my experience with my rheumatologist. She sees people who are really really sick and she also sees me. I am not that sick at all. My condition is not life threatening nor has it caused huge problems for me in the past. But the problems it does cause me feel like a big deal to me and when doctors do not take these things seriously it feels like you are being ignored. It feels like the problems you’ve come to them for are invalidated.

As a future medical professional myself I never compare people’s conditions. Just because one patient is sicker than another doesn’t mean that they can be made to feel that their condition isn’t a big deal. I also try to put myself in the patient’s position and think to myself, “if I was this patient, with this problem, what might I be feeling?” and based on that I try my best to treat them accordingly.

Yesterday I had my 3rd review since starting Plaquenil/Hydroxychloroquine in November 2014. I expected my rheumatologist to be engaged, to ask questions and to do a physical exam but instead I found her to be disinterested, unwilling to ask questions and unable and/or unwilling to answer my questions. The only examination that she did was on my ankles as these have been causing the most problems. I explained that my wrists were sore. Her response was to say “okay”, she didn’t look at my wrists or ask any more about them. I asked her about my hair falling out and all she could tell me was that it might be my autoimmune condition but she didn’t look at my hair. I came out of that appointment feeling totally invalidated, she knows I have pain and she doesn’t doubt that but by not examining me and not letting me know what she is thinking she makes me feel as if she doesn’t care.

I felt as if I couldn’t tell her everything that was going on because she didn’t care. I felt as if I was bugging her more than being her patient so I didn’t ask about things I was intending to ask about which was daft because I had waited four months for this appointment but when you are facing someone who you feel doesn’t care what you are saying or seems completely uninterested, it is hard to go into the things that you want to discuss. It’s easier to just leave them.

This appointment has had a few outcomes:

  1. My ANA is now negative where it was positive before… but we don’t know what this means or what has caused it [although I believe it was the Hydroxychloroquine]
  2. The MRI of my ankle came back clear but it is going to get reviewed by a specialist to double check, and if it is clear I will get referred to physiotherapy [which is what I requested]
  3. My Rheumatologist didn’t say anything about the Hydroxychloroquine so I am going to continue it at 400mg as I was prescribed until someone tells me otherwise
  4. I can try OTC topical NSAID gel to see if that helps on top of the Naproxen and paracetamol – I have since bought Voltarol
  5. I need to get a new Rheumatologist – as suggested by many, many people throughout social media

It has been a day since my appointment and I still feel quite upset about all of this. I have been with this rheumatologist since I was 14 or 15 and she has always believed me, though is never able to give me many answers. She doesn’t seem to care that much about my case and makes me feel invalidated. But if I go to another Rheumatologist [who will be an adult Rheumatologist, not an adolescent Rheumatologist] they might not take me seriously either or even worse, might not believe me. I have so many emotions flying around, my head feels like a bit of a mess but I have decided that it would be best to ask for a referral to another Rheumatologist. Hopefully this new Rheumatologist will be closer to my University than this one was.

A late night update

It’s quite late here so I am only going to write a quick update… At this rate I am only going to get 5 hours of sleep.

So the other week I had my review with my asthma nurse to see whether Singulair has worked for me… It had not, and in my opinion it was a waste of money. The only effect it had was to give me wacky dreams and to keep me awake, and was generally something that I didn’t feel comfortable taking anymore. My peak flow was in the green zone and I felt well controlled, but yet exercise was still an issue. My asthma nurse decided to grab another nurse in to help with the consultation and her advice was to see the chest consultants up at the hospital. I was not too keen on this idea though. I’m not going to go into details but unless you know me well, you probably wouldn’t know that I have quite a lot of stuff going on in my personal life right now and I do not need another consultant, that I don’t feel I need, complicating that right now. I managed to convince the two nurses to let me have a trial of Seretide again. For those of you who are new to my blog, I tried Seretide as a DPI for about 2 months back in 2012/2013 and found that it actually exacerbated my asthma, so this time we have decided to try the MDI [aerosol version] of Seretide and see what happens. The problem with Seretide is that you don’t get the dosage flexibility that you do with combination inhalers containing formoterol as the LABA component [AKA Symbicort, Flutiform, etc]. I used to take Flutiform 125/5 2 puffs twice a day on a normal day and 3-4 puffs on a day that my asthma was bad or on days I was exercising. However, I was prescribed Seretide 125/25 2 puffs twice a day so there is some mismatch in dosage that I was worried would mess with the control that I already had. But my breathing has been really good since starting it (with the exception of one attack which was due to me completely ignoring my triggers on a night out… so basically I caused myself to have an attack, not something I would advise!). I am still worried about what might happen if I get a cold, which is when I would normally increase my dose of Flutiform but right now things are looking up!

I also wanted to update you all on my joints, they have actually been feeling pretty good recently. Not much pain or morning stiffness at all. I am still getting swelling in my ankle, but we are now querying whether that is due to this autoimmune condition or whether it is due to a mechanical problem… I have a MRI in May to try and work out what is causing the pain and swelling there. However, this past week I have seen a massive increase in pain, and stiffness, and fatigue. In fact my joint pain was so bad at one point that I as seriously considering going to A&E… while you are sitting on the floor in your bathroom, trying not to vomit your anti-inflammatories up from the pain, A&E seems really, really inviting. But I got through it, the meds kicked in and I was mobile again surprisingly. I honestly thought that day was going to be a day from hell, completely spent in bed but I actually managed to go out for a run that evening. I spoke to Britt [AKA The Hurt Blogger] about this as I have read about similar experiences she has had, and she has found that exercise can reduce her symptoms, of course without meds exercise wouldn’t really be a viable option but together… they help. And that is what I have found too, the meds [and heat packs, and hot showers, and ice packs] help to get me moving, and once I am moving comfortably enough to do exercise, that helps to reduce my pain and reduce any stiffness that I still have. Don’t get me wrong I am still sore, I do still struggle but exercise helps to make my struggles easier…

I have also been experiencing some newer symptoms… or maybe they aren’t that new and I am only just recognising them as symptoms now. I have been having experiencing hair loss, literally I loose a handful of hair every time I wash my hair. I am so thankful that I have thick hair, I don’t know how I would look otherwise. I am pretty sure it’s not the meds because I don’t really take anything that can cause hair loss, and I have been on all of my meds [except from Seretide] for long enough now to discount that as a symptom. A friend of mine [who deals with autoimmune arthritis, among other autoimmune conditions] has suggested that it could be the inflammation from my condition causing the hair loss, which is a distinct possibility. I have also been getting nose ulcers… for those who don’t know what these are they are essentially the same as mouth ulcers but in your nose, and mine are incredibly painful! I asked a pharmacist about them and she suggested trying vaseline on them to try and soothe them a bit, and it helps to a certain extent. Since the end of February I have had about 5 or 6 and they are definitely not pleasant. These are two symptoms that suggest that my condition is not as controlled as I had thought and will definitely be brought up to my rheumatologist when I see her next… These may also help with narrowing down my actual diagnosis rather than just being labelled with an autoimmune disease.

Asthma and exercise: My current experience

I haven’t really blogged that much about my asthma for a while, mainly because I have been focusing on my joint health a lot. My asthma has been pretty well controlled these past few months, and I have only really experienced symptoms if I am exposed to a trigger. My Ventolin usage has been right down which is excellent, my peak flow has been okay for the most part, and I haven’t really needed to increase the dosage of my Flutiform that much either.

My main issue has been when I exercise. My friend and I have just finished our second week of running using the “Couch to 5K” app which gradually increases the distance, and length of time that you run for over a period of 9 weeks until you can run for 30 minutes [and hopefully run a distance of about 5k] at the end of it. I have never been a fan of running, although a lot of the sports I used to do involved running [football, cricket, netball, ultimate frisbee, rounders, etc]… I just hate how running makes me feel while I am actually doing it, I hate how tight my chest gets, and I hate how it makes me cough, I hate the excessive mucus production I get after every run [that may be a bit TMI]… But having said that, I really like how running makes me feel after I have finished a session [apart from the chest issues part]. The release of endorphins is fab. My main concern is now that the app is slowly increasing the length of time I have to run for… Running intervals of 90 seconds makes me feel like my chest is going to kill me, so how is running intervals of 2 minutes and 3 minutes going to make me feel next week, or running for 5 minutes the week after.

I admit that I am not that fit right now, but being unfit does not make you wheeze, it does not make you cough till your head hurts, it does not make you feel like you have an elephant sitting on your chest. Being unfit makes you more out of breath, more hot, more sweaty… that is the difference between being unfit and having asthma that is triggered by exercise. I explained all this to my asthma nurse on Monday and she decided that we could try Singulair to see if it helps. I have just done my 2nd run since starting it and so far no difference, although I haven’t been taking for Singulair long enough to make a difference so hopefully I will see a difference over the coming weeks. I have also increased my Flutiform to 3 puffs twice a day on days I am exercising and I have also started pre-medicating with 400mcg [4 puffs] of Ventolin before I exercise… Both of these are helping somewhat but I am still really struggling… I have also started taking my peak flow before and after exercise, and even with the added Ventolin and Flutiform my peak flow still decreases by up to 100 points [in my case this is equivalent to 25-26%, although this drop can range from 13% all the way up to 26%, most likely depending on how I was feeling that day, as well as environmental factors]. If the singular doesn’t decrease this drop, or if I am still feeling pretty rubbish during exercise my asthma nurse and me are going to have to put our heads together to work out what is best in terms of treatment.

However, despite my asthma I do feel as if I am getting stronger, I have lost 5kg [11lb] since January, and I have only been exercising properly for the last 2 weeks… Right now I try to swim twice a week, and I run 3 times a week too although because of my asthma, I can’t work out as hard as I would want to, but with the right treatment I’m sure that will change. It is just very frustrating because my joints are at a place where I can exercise and build back the muscle I have lost and I am really motivated to get fit but my lungs are putting the breaks on it a bit… I am so incredibly lucky to have an asthma nurse who understands what it is like to have asthma, and have it preventing you from exercising to your best ability [she has asthma herself, and likes to cycle], and she isn’t one to tell me to stop exercising like my last asthma nurse asked me to do… Actually my last asthma nurse asked me to quit my job [as a swimming teacher and coach] and to stop swimming, but this asthma nurse is happy for me to continue exercising as long as I know when my lungs have had enough, and she is fully on board with trying new treatments so that I can work out as much as I can, within reason of course.