My new ‘normal’

June 19, 2014 § 14 Comments

I have recently been told that RA is most likely not the correct diagnosis for me. I still want to support RA awareness week and the National Rheumatoid Arthritis Society (NRAS). For now I will refer to my condition as RA or autoimmune arthritis…

This week is RA awareness week and while I’ve been doing my bit to raise awareness (writing an article for a local magazine, putting up posters and leaflets in GPs and pharmacies, collecting donations) I realised that the worst thing I do for RA awareness is spending most of my time downplaying symptoms to those around me. I really shouldn’t wonder why people don’t realise what I go through, the severity of my symptoms or even the fact that I have pain all the time. I’ve realized that I need to be honest about my symptoms once in a while to truly raise awareness of this condition.

Since I started getting symptoms over two years ago, I am in pain all the time. My new ‘normal’ is pain- that’s my baseline. This pain varies between an uncomfortable buzz which I can push to the back of my mind to carry out tasks, up to agony which leaves me in bed for days rotating ice packs around my body and taking strong painkillers which leave me dizzy and nauseous.

I constantly feel this pain in my wrists, elbows, mid and lower back, my sacroiliac joints (the joints between the pelvis and sacrum) and ankles. Sometimes my fingers, toes, hips and knees join in and there’s no real trigger for those. Generally the pain I feel is a deep, burning, gnawing pain. All my muscles feel tight and achey, like I’ve just run a marathon or something. I feel like someone is pressing all my joints together, they feel awkward and bruised. It’s really hard to articulate how I feel and reading it like this, it’s frustrating because I just can’t explain it. To feel like this constantly is emotionally and mentally draining.

Certain things I know will make my joints worse, so I avoid them as much as I can. Sitting or standing still for longer than a couple of minutes just builds up the pain until I want to scream. I can’t carry much in my hands before I feel like my wrists and fingers are being pulled on a medieval torture rack. Even sleeping causes pain because I can’t lie on my back or front due to the back pain, but lying on my side puts too much pressure on my shoulders and hips. I wake regularly in the night to change position and stretch my joints because the longer I’m still, the more the inflammation builds up. Ironically, you’d think a night in bed would be the best thing, but the mornings are the worst. I wake up feeling totally un-rested and my joints feel crumpled up. Oh how I wish for the days where I’d jump out of bed, feeling the bountiful energy and wondering what endless things I could do that day! Okay, maybe that’s a rose-tinted view, I was never a morning person, but I certainly physically felt good even if I was a grump.

The physical fatigue I feel is like no fatigue I ever experienced before getting ill. The closest I can get to explaining it is like when you have the flu. Not a normal cold people get in the winter, but full on flu. When you think about, my body is constantly producing immune cells which are attacking the linings of my joints. This in itself, produces inflammation throughout my body- my body is spending so much energy just to do this! It’s no surprise that I’m constantly exhausted and I feel sluggish.

I don’t talk about my condition this honestly to people, especially in person, because I don’t want to sound like I’m complaining. This is my life. There is nothing I can do to significantly change it and actually at this point, I am probably at the best point I physically will ever be. Unfortunately, RA is a progressive condition. I can look after myself as much as possible, try to save my energy, avoid activities which I know will aggravate things, take my meds regularly, keep looking for that ‘miracle cure’ that people seem to believe exists. But in the end I, like anyone else, want to live my life, follow my dreams and be happy. I want to live a worthwhile life but feel like I’m up against it, like I’m have to battle my body every step of the way. I have to find that happy medium between doing what I want to do and what I have to do. I don’t want to feel like I’m limiting myself, so I have to consider everything and work around it. I do feel sad that I cannot do everything I want to do, that before agreeing to any plans with friends consider whether I have too much going on around that day to commit- of course, I may just wake up on that day, even after conserving my energy for weeks, and my body tells me there’s no way we’d be making it.

The one thing I can change is other people’s knowledge about RA, who it affects and how. Just reading a few articles on people’s experiences with an invisible illness show the kind of ignorance we face. To other people, I must look like a happy, healthy 22 year old. They can’t tell that I am sometimes in agony and when I pop to the shops it’s obviously a good day. If I have to get a bus at a busy time and take a seat, it’s not because I’m an ignorant young person, it’s because I need it. You cannot judge someone from the outside as to whether they need some help or a seat and hopefully by a few people reading about my experiences that may just help change their perceptions. It’s very strange to feel like you have to tell people about a very personal aspect of your life- your health- but sometimes it is necessary.

Thank you for reading, please feel free to comment and share my writing. I really do hope that through this I can help in a small way. You can contact me at onshegoes@gmail.com

Keep well,

Zoë x

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Diagnosis Roulette!

May 19, 2014 § 3 Comments

Sorry for the delay in posts, my symptoms have been quite bad lately. Over the past couple of months, my new rheumatologist has revealed that I don’t have Rheumatoid Arthritis, but she’s not sure what I do have. After the shock of realising I’ve been mis-diagnosed, and therefore on the wrong treatment, for over two years, I’ve come to understand that I don’t necessarily need a label. All I need is to advocate for my own health and with an understanding doctor, we can find the correct medication to give me some relief.

“Well, my pain is still really high, my joints keep swelling up, I’m finding it hard to keep up with studying and my back pain and reduced mobility is just getting worse and worse. Plus the vomiting from the methotrexate is getting bad” I poured out to my rheumatologist, Dr B. This was met with the usual “hmm, okay, increase the prednisolone and come back in four weeks” Handing me a piece of paper scrawled with a dosage and instructions for the receptionist to book the next appointment, I was ushered out of the room. I had been waiting weeks for the appointment and hours in the waiting room, to be met with a doctor who saw me as a Rheumatoid Arthritis patient, not a person. He wasn’t listening to me. My symptoms were not under control and I was experiencing new ones which don’t fit an RA diagnosis.

I was 20 years old and still relatively new to the scary world of hospitals, tests and of course these strange symptoms my body was having. I was training to be an Osteopath at the time, so whenever I experienced a new symptom my brain would jump into action thinking of all the possibilities it could be. I put up with this rheumatologist for over a year because I thought I had to. I had a similarly uncaring GP who would brush off any symptoms and when I said how I was training to be an Osteopath, he said sarcastically “huh, good luck with that” and stood to open the door for me to leave! That was the last appointment I had with him. I made it very clear to the receptionist if I was requesting an appointment that I would not see him.

After graduating, I moved back home to live with my parents and decided to move rheumatologists too. I went to my first appointment prepared with a write-up of my medical history, symptoms, treatment tried so far and a list of priorities. Near the top of the list was reducing the nausea and vomiting from the methotrexate and to diagnose and treat my back pain. I met Dr R and she sat and talked to me for over half an hour. She read through my entire write-up and summed up that the management of my condition so far was not good enough. She immediately decided to change the methotrexate to injections to reduce the side effects and gave me a telephone number to contact the rheumatology nurse to update her on the progress. I was even scheduled to have an appointment to teach me about the medication and how to take it, rather than relying on doing my own research like I had to with the previous doctor.

I eventually moved onto a new medication because I was still getting bad side effects from the methotrexate, no matter how I took it. Then Dr R explained that she didn’t think I had RA. This opened up a whole range of possible diagnoses and treatments. Luckily with my Osteopathic knowledge I knew of a particular blood test to check for spinal inflammatory diseases, my GP ordered it and after the relief of a false negative, my GP called me in again to tell me that it had been ‘reviewed’ and was actually positive. So with a positive blood test, an MRI showing no inflammation and loads of random symptoms, Dr R is now reviewing everything with the head rheumatology consultant to get the most accurate diagnosis.

The problem with rheumatic conditions is that there can be a lot of overlap of symptoms between conditions and you can have more than one! Although I am now in a situation of diagnosis-limbo, I am happier knowing that we are searching for a more accurate diagnosis. Dr B would have blindly continued along the RA path, getting frustrated at me for not improving on the RA medications, never stopping to wonder why. It’s so important to have a doctor you can trust. In the UK, although we don’t have to pay to see the doctor, we have to remember that they are actually working for us. They are there to help us. If they are not helping, we have to tell them. They don’t read minds and, unfortunately, there is no ‘pain-ometer’ they can plug us into to see how much pain we’re in! We have to do our own research, speak to the doctors honestly about the symptoms and side effects we’re experiencing and most importantly, trust our instincts. We know our bodies better than anyone else does. My blood inflammatory markers are almost always within normal range, no matter how good or bad I feel. Doctors who rely on blood test results may never actually know what their patients are going through or how well the disease is being controlled. With our doctors, we have to look at all our symptoms, blood test and scan results and take it all into account to reach the most accurate diagnosis we can. After all, a diagnosis is just a label stamped on us to get us onto the path of trial and error with numerous medications.

As Dr R said at my last appointment, “diagnosing you is difficult, because you fit every criteria for everything!” But you know what? For me, a diagnosis is not a priority, finding the right medication is. So whether I have spondylitis, psoriatic arthritis, rheumatoid arthritis, AS, or a combination, I will still be pushing to try the next medication each time one fails. Until then, I’ll just label myself with ‘autoimmune arthritis’ and that will have to do

Please feel free to comment and share my posts. You can also contact me at onshegoes@gmail.com

Thanks for reading! Keep well,

Z x

The Importance of Active Self-Care

April 7, 2014 § 4 Comments

It’s natural in the wake of a diagnosis of a chronic condition to reject it. No matter how much doctors tell you about it, how much you read up online in the small hours of the night when you can’t sleep, no matter how much your symptoms match, you don’t want to accept this illness into your life. You feel like if you don’t believe it, it’s not happening

That’s exactly how I dealt with my condition in the beginning. Despite being at University training to be an Osteopath and knowing that my symptoms and blood markers all matched, and after the knee injury and surgery prior to the RA symptoms appearing, the only thing I would accept is that it fitted with the run of bad luck I was having. My response was that if I didn’t modify the way I lived my life, then I could force the condition to adapt to me, rather than the opposite

Obviously this was totally the wrong way to go about things and I was quick to painfully realise that. The more I continued to live the ‘normal’ life of a 20 year old, the worse my symptoms got. Gradually I came to accept that this condition was here to stay and I would have to adapt my life around it. That realisation was the easiest step. The next step was to actually start modifying my behaviour and start looking after my body more than I ever had before

I found managing medications quite easy. Although I had never liked taking prescription medication, I had read a lot about the real improvements in symptoms when you find the right combination of meds. I use a weekly pill box to avoid mixing up medications and it really helps, particularly when going away for a night or two. This does throw up the difficulty of how do we persevere with medications which are seemingly useless or cause us to experience awful side effects? I’m afraid this is a matter for another day, and another post!

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A more personal defiance was that I was glad my illness was invisible. I hated anything that made me appear ‘sick’ or ‘different’

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Reading “How To Be Sick” by Toni Bernhard helped with this internal conflict. Further ponderings and long talks with a counsellor helped me realise that I have to look after myself more. It doesn’t matter if I wear my wrist braces in public because even if people ask me about them or stare at me thinking “what’s wrong with her?!” It doesn’t actually matter! I will never see these people again and I don’t owe them anything and I don’t have to educate every person I meet about my condition. It seems like a harsh statement, but it’s just the reality. As my condition progresses I will most likely not be able to hide my symptoms, so I will have to learn to deal with other people’s reactions. The best way to deal with them is to not worry

So I have begun to embrace all the help I can get. If I can use some simple aids to ease my pain and make things easier, then I should. I’d like to share with you some of the items I have found useful. Everyone is different, so these may not all work for you, but I hope that they do

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Hot and cold packs can be really helpful for swollen joints and sore muscles. These are the best packs I’ve found for when I’m out of the house. You can get the heat packs in a ‘U’ shape to go across the muscles at the top of the shoulders and it feels heavenly! This ice pack is amazing- you just pop the liquid packet in the centre and the whole pack freezes. It’s only one use but I sneakily use it on my lower back when I know I’ll have to sit for a long time but can’t take a freezer bag. Places I’ve had it tucked in the back of my trousers include cinemas, trains, university lectures, the list goes on!

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These are even better for on the go and also lighter to carry, but are less effective. The Biofreeze is a cooling spray and the tiger balm is a warming cream (but beware, don’t touch your eyes after touching the Tiger Balm, trust me!)

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These compress bandages are available in different sizes so can be used for all peripheral joints. Just beware that they’re not too tight and affect blood flow or force inflammation into other joints. In the bandage above you can cut a hole about a quarter down for the thumb to go through if you need a wrist compress

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This is a resting splint made for me by a local Occupational Therapist. They’re used at night or when resting to leave my wrists in a comfortable position. They’re moulded plastic so can’t be heated (they’ll lose their shape) but can be put in the freezer to cool them before wearing

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I currently use the grey braces to sleep to protect my wrists. The blue braces are made of a cushioning elastic material to provide some comfort while out and about and also are less noticeable!

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 These fingers splints are another wonderful item provided by my lovely Occupational Therapist. I have hypermobility so holding a pen has always been difficult. It was always a running joke at school about the weird shape my fingers make when holding a pen, but I never thought there was much I could do about it. These splints allow my fingers to bend and grip, but not hyperextend

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The pen grip is also useful, especially at work when I’m writing while treating patients because I can’t wear the splints then

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An ingenious use of foam tubing found in most hardware stores. Making the grip on things like cutlery, toothbrush, makeup brushes, hairbrushes larger makes daily tasks that little bit easier. Tasks which most people don’t have a second thought about can be seriously difficult, especially in a flare

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This jar opener has saved my fingers and wrists from a lot of pain when there’s no one around to open the jar for me. In fact, it gives me a sense of satisfaction that with this simple device I can usually open a jar myself, even if it’s never been opened before! It can be used on a variety of jar sizes and different diameter aids are available to offer more varied help. I used it as pictured, by pressing down with my palm and not gripping with my fingers, then moving my whole arm or body to rotate it. Very little finger or wrist pain is a luxury!

Not only can you practise self-care through the practical advice I’ve listed here, but you must also treat your body kindly and work with it, rather than against it. I used to feel like I had to fight my body to do something I loved, like it was trying to take things away from me like running, dancing, seeing friends, even going for a walk along the beach. I felt like I had to trade an activity for a kick-back of symptoms. However, now I’ve learnt to love my body and accept that this condition will have an effect on it, it isn’t all of my life. I do have to factor it into all my plans, but knowing I have to use my my energy wisely means I actually do. If I know I want to go out with friends one evening, I will make sure I have a few quiet days either side of it. Of course, sometimes I’ll wake up on the day and know that I won’t be able to make it, but at least I’ve prepared myself as well as I can. Sometimes I will push my body hard for a few days at work, taking on more patients than I probably should, but then I have a few days of lots of sleep, resting, keeping topped up with painkillers and say to my body “thank you for allowing me to work hard for the last few days”. I’ll treat myself to some yummy food (usually vegan cookies!) and have a bath with some uplifting songs, then maybe watch a film. It’s important to appreciate your body, show it some love when it’s been fighting so hard to get through despite the condition you have! Don’t think of yourself as ‘broken’, you just face more challenges than you used to. And hey, that makes your achievements even more great

Another useful tip is to notice and enjoy the little things. It can be incredibly difficult, especially when symptoms are bad, but a great technique is to keep a notebook or just a mental note, each day of five things you’ve been grateful about. It may be that painsomnia was keeping you awake, but you saw a beautiful sunrise when the rest of the neighbourhood was asleep and missing it. You could see a beautiful flower when out walking. Maybe yesterday you couldn’t do something like cook a meal, but today you are well enough to. Celebrate the little things! When we’re faced with big challenges, it’s easy to feel overwhelmed. Bringing this mindfulness and positivity into the small aspects of your daily life all add up to a big feeling of appreciation. The other book I have found helpful is “Mindfulness for Health”. I am gradually improving at using relaxation and mindfulness techniques to have 30 minutes of peace and comfort

Especially for people newly diagnosed or for younger people, a diagnosis of a chronic condition can feel like a whole change of identity. The symptoms you experience, the side effect of medications and your diary beginning to fill with medical appointments which used to be a rarity are now the scary reality. Though it may be a huge change, it’s not everything in your life and you will learn to have chronic illness as part of you, not all of you. Making the choice to use aids as you need them is a bold move; it usually comes after a shift in acceptance and an increase in confidence. There may well be a lot of negativity around the diagnosis in the first years, but once you have accepted it and learned to live with it, then it’s easier to bring positivity into your life. I think it’s something that can’t be rushed because it will happen when you really need it to. But have faith that you alone can make the decision to accept your illness and all that emotional baggage, and as difficult as it may seem to begin with, you will get there

Please feel free to comment and share my posts. You can also contact me at onshegoes@gmail.com

Thanks for reading! Keep well,

Z x

An illness which is ‘invisible’: a blessing and a curse

March 2, 2014 § Leave a comment

Having an illness which is not particularly noticeable to those around me is both a blessing and a curse. I am always appreciative that even when I feel awful, people often don’t notice. I can use makeup to hide the tired bags under my eyes. I can wear baggy clothing to hide swollen joints. Even painting a fake smile on my face tricks those who don’t know me well. People close to me, however, can see through this. They notice when I’m in more pain my movements are more limited and guarded. They can tell I’m distant and distracted from their conversations because I’m trying to cope with symptoms. If I take my strongest painkillers then it’s quite clear I’m feeling ‘spaced out’! My temper is also much shorter when my pain is higher. Even side effects of medications cause things like foot rashes, the bruises from blood tests and other results of treatments can make me stand out.

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One of my wrist braces, perfect for sleeping or driving

I’m often able to stay within my comfort zone and blend into the ranks of ‘normal’ people going about their lives. But when does it become less of a habit and more of an anxiety? The reason I feel uncomfortable about wearing my joint braces in public is simply due to the reaction of strangers. When I wear my wrist braces or in the past was on crutches, I get quizzical looks from people and, surprisingly, strangers will actually ask me about them. To them, it may just seem like friendly curiosity, but to me it’s rude and prying! From my searches online, it seems like this is not a rare consequence of using visible aids, particularly for younger people who otherwise look perfectly healthy. People who use braces, canes, wheelchairs, or even who need to sit on journeys have to frequently ignore staring and navigate inquisitive individuals.

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Foot rash (easily covered with shoes, until the hot summer!)

For a long time I used to just rant about my experiences, avoid wearing any braces and make an effort with my appearance if I had to go out. Only recently have I realised that it’s quite an unhealthy and short-sighted reaction. Rheumatoid arthritis is a progressive disease and eventually it will not be an ‘invisible illness’. Having this condition has taught me that self-care has to be my number one priority and I have to see using aids like braces and walking aids as another extension of self-care. Why should I cause myself more pain by not wearing joint braces, just to save myself the discomfort of being asked about them? Why should I expend more energy getting ready to go out just to look healthier, when it’s rare I have enough energy anyway? It is entirely in my rights not to answer questions from strangers, or if I feel I want to, I can use it as an opportunity to educate them about my condition and other invisible illnesses.

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A bruise from a blood test

I feel I am saving others the embarrassment of talking about it or wondering why I need braces and so on, but I actually don’t owe these strangers anything. It may sound harsh the way I am describing people, and they may well be friendly and wanting to help or just wondering why I’m wearing something when I look otherwise healthy. They may think I have an interesting or funny story of a recent injury. But I live with this condition every day and sometimes I like to push it out of my mind as much as possible. I do not have to be everyone’s teacher about my condition and I don’t have to answer them to save their discomfort.

So these ways to cope, reduce pain or consequences of tests and treatment, though they break the illusion of ‘health’, don’t reduce my rights as a person. It’s my choice to use the aids and it’s my choice to disclose why. I shouldn’t decide whether to use them based on how others may feel or react to them, I should simply use them because I need them and not feel anxious about it.

Introduction

February 13, 2014 § Leave a comment

This is my first post on this blog, which I have started to share with people what it’s like to live with rheumatoid arthritis as well as provide support and advice to others with it and other autoimmune conditions.

DSC_0528I love visits to the sea when my body allows

I’m 22 years old and live in the UK. I’ve recently finished uni and am living at home with my parents again while starting work part-time. The amount I can work is limited with my condition, but I’m glad I’m able to work at all.

Check out my about page for the story of how this all started just under two years ago. It already feels like a long time since I was diagnosed, and yet I am still on a long journey of acceptance and adapting my life to suit the disease.

Rheumatoid arthritis is different to ‘wear and tear’ arthritis (osteoarthritis). It can occur at any age and for no particular reason. I started getting symptoms at 20 years old, but juvenile arthritis can start much earlier. It’s an autoimmune condition, which means that the immune system of a person’s body, which usually fights bacteria and infections, launches an attack on its own cells and primarily the joints. Symptoms include joint pain, swelling and limited movement and fatigue.

Treatment aims to manage symptoms and also restrict the activity of the disease with immune suppressing drugs. The inflammation and immune cells damage the cartilage and bone of joints, which can lead to permanent disability and the need for joint replacements. The inflammation can also affect any tissue in the body, including organs and the eyes. A terrifying reality I faced when a routine check recently picked up blood in my urine, indicating kidney inflammation. A more aggressive treatment for a few weeks helped, but it brought home how serious this disease is. It’s not just ‘aches and pains’. Patients tend to go through lots of treatment regimes in order to find an effective one, aiming for a period of ‘remission’. So far I haven’t reached this stage and I’m slowly working through the groups of DMARDs (disease modifying anti-rheumatic drugs, the immune suppressors)

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Learning how to inject myself with low dose chemotherapy (methotrexate)

Emotionally this is a very difficult process to go through. When I was first experiencing symptoms it was very scary, the worst things tend to go through your mind in situations like that. Then when you’re told you have rheumatoid arthritis, a lifelong disease which could potentially leave you physically disabled or take your life, it’s a lot to process. In one thought, I was glad to have a diagnosis and reason behind all my pain. In another thought, I know I’d much rather have something temporary!

I’ve been making efforts to speed up my acceptance of having this condition. Recently I’ve begun counselling because I’m not very good at opening up to people about my condition. I always feel it will push them away or sound like a call for sympathy. This is something I’m hoping to work on through this blog. I have also identified a cycle I tend to go through. I start by feeling as if I’m coping well, then realising I’m just suppressing my feelings, then start to feel overwhelmed as I process them so I head back to my coping mechanism of suppressing! I’m sure it will just take time to break the cycle or work my way into a productive one

My main symptoms are pain and swelling in the ankles, wrists and elbows. I also have a lot of pain throughout my spine and sacroiliac joints, which is undiagnosed but undergoing testing. The fatigue I get is quite severe and I find I have to monitor my activities a lot. I work 3 days a week and on my days off I spend most of my time resting. I can be quite unreliable with socialising because I may wake up on the day with severe fatigue and pain and can’t make it. Planning ahead is impossible and that’s something that frustrates me a lot!

20130918_191010It’s amazing the power of six tiny pills

I’ve tried various medications so far, the DMARDs have been hydroxychloroquine, methotrexate tablets and methotrexate injections. The side effects were too serious for these so I’ve moved onto leflunomide. It’s been 7 weeks now so I should start to see some response from it now, if I’m going to. The other medications I’m on is:

  • Naproxen (anti-inflammatories)
  • Omeprazole to protect my stomach from the naproxen
  • Cocodamol and tramadol as needed for pain relief
  • Amitriptyline to try and help me sleep through the back pain

20131010_114822My two cats don’t mind helping fill my weekly pill box

Rheumatoid arthritis isn’t just a chronic illness, it’s also an invisible illness. Sometimes a blessing, sometimes a curse, the only way people can tell I have a condition is if I wear joint braces or they spot the bags under my eyes, the frequent yawns, the occasional wince of pain or the careful and often slow movements.

I hope that my blog will be helpful for people who don’t experience a chronic or invisible illness to learn what it’s like. I also hope that I can provide support and information for people in a similar situation to myself. I welcome feedback or messages through the comments below or feel free to email me at onshegoes@gmail.com

Keep well, Z x

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