Tag Archives: physiotherapy

#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.

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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.

Achilles tendonitis and podiatry 

People who have been following this blog for a while may remember that back in December I was diagnosed with Bilateral Achilles Tendonitis (a fancy way to say inflammation of both tendons at the back of the ankles). I got my Achilles Tendonitis diagnosis just 3 weeks after I had been diagnosed with an Autoimmune disease so the thought was that it could be my autoimmune disease causing the inflammation. Makes sense huh? Well it isn’t quite that simple. Achilles Tendonitis can be caused by an autoimmune disease BUT it can also be caused by mechanical problems such as flat feet etc. And I do have flat feet. So my Tendonitis could be caused by my flat feet or by my autoimmune disease or both. 

My Rheumatologist referred me to a podiatrist that specialises in Rheumatology for some exercises/insoles that in theory should help strengthen position my feet in a way that reduces the strain on my tendons therefore preventing them from becoming inflamed because of my flat feet. But a podiatrist can not do much for inflammation caused by my autoimmune disease. The first podiatrist I saw believed that my autoimmune condition was the cause of the Tendonitis and it had nothing to do with the fact that I have flat feet because I already had insoles. I have given exercises to do and told to come back in a few months.

Those few months passed quite slowly. Although the Tendonitis was resolving, it was taking a long time and so by the time I saw the second podiatrist, I was better but not 100%. This time they decided to have a look at my insoles. It turns out that the hard plastic material my insoles were made out of couldn’t even support the weight of my podiatrists hand and would flatten out. Meaning that my insoles were pretty much useless as they couldn’t hold their shape when I stood on them. The plan from there was to get molds of my feet (involing me standing in a shoe box full of foam) and to get custom insoles which I should be getting tomorrow.

It took over 6 months for my Achilles Tendonitis to resolve, or almost resolve because I still had a few days where they were sore. But since the start of this month my heels have been getting progressively more sore. Not a good sign. As a physiotherapy student I am able to do a mini assessment (I can’t do everything because it’s actually surprisingly hard to assess your own feet) which is telling me that it’s quite likely my Achilles Tendonitis is back, and based on the area of my tendon that hurts (the insertion site) it’s quite likely that it is because of my immune system rather than if a different area of my tendon hurt which would be more likely a result of strain or injury.

Something that we also found with my tendons is that one is thicker than the other. This is usually a result of inflammation, so the 6+ months of inflammation I had earlier this year have caused scarring at my Achilles tendon causing it to become thickened. There isn’t an awful lot I can do about that unless it becomes so bad that surgical intervention is needed, which is not necessary right now. But hopefully with the help of these insoles we can reduce any inflammation caused by my flat feet and that won’t become any worse. 

I see my rheumatologist next week, on the 29th, and this will be another thing we have to discuss. I am getting worried now that the combination of me having more inflammation at my tendons and already having one ankle that has lost a significant amount of movement is going to cause problems for me. Walking is hard mainly because of the pain so I am back to taking Naproxen 500mg twice a day and topping up on Paracetamol as needed but that is only doing so much. Walking is also hard because of the lack of movement in my right ankle which means that walking on uneven ground or up steps that aren’t level is quite difficult because of the lost flexibility. I don’t think I wrote about the problems my ankle has been causing me when I was on placement (part of the physiotherapy course is called placement, where you go out into a hospital and learn how to apply the skills learnt at Uni in a hospital setting with real patients). With most patients I was okay to treat them while I was standing up which is perfectly fine for me, but for a few patients their treatment involved me kneeling. My ankle is not flexible enough for me to kneel, and at one point the pain caused by my needing to kneel resulted in me nearly passing out and almost being physically sick. This is a major problem because if I can not kneel, working is going to be difficult. I am terrified that I won’t be able to work in the future because I won’t be able to sit in the positions that I need to, to treat patients. I’m terrified that the Plaquenil/Hydroxychloroquine medication I am on is not helping me sufficiently so that I know I will be able to work when I qualify, and I know I will be able to finish my course. And I am really angry that my joints have got this bad that I am terrified about my future. This should never have happened, I should have started physiotherapy as soon as it was apparent I was loosing range of movement instead of being in the position that I have lost the range of movement and I don’t know how easy it is going to be to get back. Physiotherapy is definitely one thing that I am going to ask my Rheumatologist for. Along with discussing whether the Plaquenil is working sufficiently to help reduce the inflammation in my joints even though I am still swelling and sore and stiff.

A busy, busy week, and some more answers!

I’ve had a crazily busy week this past week with 3 different appointments. On Monday I had to see my GP. I had rang him up 3 weeks ago [it takes 3 weeks to get an appointment with my GP]… I rang him when I was in the middle of a flare, and I was hoping that he would be able to help me out with some pred. However, he was incredibly rude and said that he was unwilling to do anything for me as I have a consultant. He also said that I was going to become disabled because I have an autoimmue disease… I was completely shocked, not only has this doctor just met me 2 minutes ago, and clearly had no idea how to treat my condition, he automatically assumed that I will become disabled despite not being a specialist and then he was unprofessional enough to tell me that I will, not that I might, but that I will become disabled. When he saw the look on my face he added that I’ll only become disabled if my condition doesn’t magically disappear… Anyone with an autoimmune disease will know that they hardly ever disappear, although we know that remissions can happen. My GP, although being brusk and rude, did send an urgent appointment request through to my Rheumy about my joints in the hopes that I could see her earlier than March. And he gave me quite a lot of Naproxen and paracetamol to tide me over the time till I got to see my rheumatologist, and he made sure they were on my repeats. I also found out that my Rheumatologist has diagnosed me with “Autoimmune disease (doesn’t quite fit criteria for Lupus)” so it looks as if she is thinking along the lupus route for my diagnosis… I’m not too sure how I feel about that.

My second appointment was on Wednesday and was with a physiotherapist. We discovered that I don’t have bursitis but I have inflammation of my piriformis muscle. It’s unclear whether I’ve ever had bursitis and if all my symptoms were a result of my piriformis, or whether the intramuscular steroid injection I had back in November has helped. Actually this past week I have been feeling really good, I have had about an hour and a it of morning stiffness but I actually feel quite good so maybe that steroid injection has helped. The physio asked me what I wanted her to do so I have asked for a load of stretches that will hopefully help with all my stiffness, and I am happy with that outcome… She said she will leave her appointment schedule free for me for 8 weeks, meaning that any time in the next 8 weeks that I feel I need an appointment I can ring and she will see me, or if I don’t need to see her then I don’t need to ring which works fine for me.

On Wednesday my Rheumatologist’s office phoned me saying they had got the appointment letter from my GP [that I had seen on Monday] and they asked me to come in to see them on Friday [AKA today]… Talk about efficiency right?! And that leads on to today and today’s Rheumy appointment. My appointment was at 11.30, and I was actually feeling pretty good, which is good but then when you are seeing a Rheumy for a flare which has now passed, it’s not the best timing. I got to see a junior doctor first as my actually rheumatologist is on holiday till January. He did an extremely thorough examination including an examination of my chest. He said that my joints looked good, which I already knew, and I explained that when I had phoned my GP 3 weeks ago, I was flaring. He did find a little bit of fluid in my ankle which surprised me and he found that my heel pain was actually caused by achilles tendonitis. He said that he thought that I might benefit from a steroid injection in my ankle but he wanted the registrar to see be first. I had to sit back out in the waiting room for about 40 minutes, as the registrar was held up on a ward but when I finally did see her it was a really good and informative appointment. She greeted my mum and I and asked my how my SLE (Systemic Lupus Erythematosus, AKA Lupus) at which point my mum freaked out because we both are well aware of what lupus can do to a person, but when we explained that SLE can affect each person differently, Mum seemed to calm down a bit. I explained for a second time that I was mid-flare 3 weeks ago but I was doing very well now except from heel pain. She agreed that I have a little bit of fluid in my ankle but not that much, and I do achilles tendonitis but because I have flat feet she wasn’t sure whether my achilles tendonitis is a mechanical problem or an inflammatory problem… so she has decided to hold off on the steroid injection for now, and she has referred me to podiatry so they can give me more insoles… However, I have already been waring insoles for years so I am not entirely convinced that this tendonitis is mechanical, especially because it came on at the same time my flare started. I am hoping, with crossed fingers, that it is mechanical as we will be able to sort it out easier.

We also discussed my diagnosis, and we were trying to identify exactly what might be going on. She explained that arthritis is a spectrum with a lot of symptoms that overlap into more than one condition but that they try and categorise symptoms into one condition, when perhaps they shouldn’t. She said to me that I don’t quite fit the criteria for lupus, which I already knew from Monday, but that my achilles tendonitis, if it is inflammatory, actually points to Psoriatic Arthritis, and as I already have a family member with Psoriatic arthritis this makes Psoriatic Arthritis a more likely diagnosis… But then the joint distribution of the joints affected in my hands suggest Rheumatoid arthritis but my Rheuamtoid factor and anti-CCP are negative so it’s more likely that I have sero-negative rheumatoid arthritis… So in one appointment I was told that my autoimmune condition has characteristics of Lupus, Psoriatic Arthritis, and Rheumatoid Arthritis, and when you throw in Raynauds [another autoimmune condition I was diagnosed with in November] that can point to Lupus and Rheumatoid Arthritis, which means that I might have a combination of the two… AKA Mixed Connective Tissue disease… So that is a fourth Autoimmune disease that was discussed… Basically we don’t now whats going on, but we do know that I have something autoimmune going on, and we do know that the DMARD I am on, Hydroxycholorquine [Plaquenil], can treat Rheumatoid Arthritis, Lupus and Mixed connective tissue disease so it isn’t too important that we know what the condition is, as long as we can treat it.

I also got my ESR and CRP retested… my bloods last month showed my ESR to be 7 which is well within normal range, however it has increased from 2 which is where it was in May therefore suggesting that I do have a little bit more active inflammation but not an awful lot as some people end up with massively high, but this is subjective to each individual so it’s hard to compare peoples results. I also got baseline x-rays on my hands, feet and ankles which totalled 9 x-rays although I ended up having to have 10 because one didn’t turn out well, but that should do me for a year or so… Overall I have had a really busy week, and I’m really happy with how my rheumatology appointment went, even if it did take 2 hours [from going in till finishing with the x-rays].

Some progress, sort of… and a plan of action

I’ve been officially diagnosed for 3 weeks now and I think I have finally got over the initial shock. I went into that appointment expecting to be told to come back in 6 months because they didn’t know what was going on like usual, but instead I came out with 2 diagnoses of autoimmune conditions, a script for a DMARD [Disease-Modifying Anti-Rheumatic Drug] and an intramuscular steroid injection… That’s a lot to get your head around when you don’t think anything is going to happen.

I just wanted to up date you all on what has been going on with me since then. So first of all, I have noticed my Raynaud’s symptoms are popping up more than they used to… I.e. my hands and feet are constantly cold, and they change colour to this awful shade of white, they feel numb, and then when blood starts to return to them they go bright red and burn… pretty typical Raynaud’s symptoms there. I’m not sure whether I am just noticing these symptoms more because I have a diagnosis now and I am paying closer attention, or if the cold weather is causing more issues? I presume it’s a bit of both, however I have noticed that if I pick up a cold drink, or something out the fridge or freezer, my Raynaud’s symptoms flare, and that never used to happen… I virtually always wear gloves when I am outside now but it’s the activities in normal life that are causing the issue now, not the weather… I am definitely going to bring this up with my Rheumy in March, although I fear there isn’t an awful lot she can do other than offer advice. I have now started pouring my drinks into mugs with handles so my hands aren’t in contact with the cold for that long, and my Rheumy suggested wearing rubber gloves to get things out of the freezer so I will probably start doing that as soon as I get to the shop [life has been pretty hectic these last few weeks].

As for my joints… well they aren’t doing that great. I think I can officially say that the intramuscular steroid injection hasn’t helped, which is a shame but at least I know that it doesn’t help me now so I can [hopefully] avoid being jabbed in the arse again! I’m still experiencing about 2 hours of morning stiffness every day, my knees are swelling, my ankles are swelling, my hip is aching so bad, my PIPs [Proximal Interphalangeal joints… the middle knuckles] are sore, and puffy and turn pink so I think it’s reasonable to say that the steroid hasn’t helped me that much… In fact I am feeling so rough that I rang my GP and I have made an appointment for the 15th to hopefully sort out some symptom relief for over the christmas holidays until I can see my Rheumy, but I am not sure if I am going to manage through this week so I am going to ring my Rheumatologist’s advice line tomorrow and leave a message to see if they have any ideas on what to do. I am at the point where I would take a burst of pred, and I actually think I need one but I had a steroid injected into my butt just 3 weeks ago so I don’t know if you can take oral steroids so close to having an IM injection? I presume so because my old GP was happy to offer me 2 bursts of pred within a month of each other, but that will be something to bring up with my GP and Rheumy. I have also noticed a few new symptoms that have been gradually increasing in severity. The first is that my heels hurt, especially first thing in the morning… I can’t decide if it is actually my achilles tendon that is sore or if it is the attachment of my achilles tendon [AKA enthesitis] or if it’s both, but I am going to try and investigate a bit further into that. And the other is that my SI joints have been hurting, this has happened in the past when I have flared so it does kind of make sense that they are hurting now since I believe that I am flaring but it is really painful this time, more so than last time and it is really stressing me out because I can’t find a comfortable position… but such is life.

In the past I probably would have just dealt with my symptoms, and I am in two minds whether I am making this a bigger deal than it actually is but I am currently on my first physiotherapy placement at my local hospital which involves being on my feet for about 8 hours solidly a day [I usually get between 15 and 30 mins sit down time in that 8 hours] and I am actually really struggling, and some of my seniors have noticed it too and made the odd comment… I was taking part in a Pulmonary Rehab class to learn about what patient’s do in it, and it was obvious to everyone that my joints were far stiffer than everyone else’s despite all the patients being at least 5 decades older than me… slightly embarrassing as you can imagine.

This past week I have been really pushing myself on the exercise front. I have found a fab little gym that is outside and is on the riverside near where I live, and it has a lovely view of all the bridges, it’s really beautiful actually and is one of my favourite places in the world right now… I’ve managed to go to the gym about 3 times last week, and I have been again tonight. I find it really good to give my joints a good work out and it is helping with my joint stiffness, especially because I tend to go after I have been sitting down in a chair for a couple of hours doing work but it hasn’t really helped much with the pain yet… I also invested in a foam roller which hurts like hell but I can really feel it helping with any muscle tightness that I have. I am going to try and keep up this intensity of exercise for as long as I can, and I am going to try and get to the swimming pool at some point this week too [the swimming pool has really odd opening times which makes it difficult for me to go] which will hopefully help with the stiffness. I also see my new Physio on the 17th so I am hoping that she can help me out on reducing the stiffness.

All in all I think I am coping quite well with everything, the side effects from Plaquenil [mainly heartburn which meant I could only have one meal a day for 2 weeks] have subsided significantly, and I am still optimistic that it will start working… It can take up to 3 months and I have only been on it for 3 weeks so I’m not surprised I haven’t noticed any improvement yet… and if worst comes to the worst and Plaquenil isn’t the medication for me, well there are plenty others that I can try, of course I would rather this one work but I’m not going to get too discouraged if it doesn’t. This is the start of my journey into finding the treatment regime that works for me, and I am well aware from my experience with asthma, and from hearing about other people’s journeys that I might have a long way to go till we find the right med/combo of meds for me, but actually being started on meds is a move in the right direction!

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.