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Archive for September, 2012

But You Don’t Understand…

I know, there are always going to be people who don’t understand.

Yesterday was  a strange day. I woke up feeling relatively ‘okay’ – ie. I managed to get out of bed, wash, dress and make myself breakfast. I had some pain so took my pain meds and then somehow ended up like a zombie for the rest of the day, falling asleep constantly and even on the loo at one point.  But that’s kind of besides the point. I don’t remember much about yesterday at all; what I do remember is that I had to face some ‘unhelpful’ comments in the morning, which I posted about on Twitter, receiving some amusing replies in return!

I am very lucky that most people in my life make a real effort to try and understand what life is like for me, but still there are one or two that I have trouble with and one is my future Father in Law. We get on fine for the most part, but he does not tolerate illness very well and has upset me with comments on numerous occasions. His favourite themes are that if I did more, or got out more I would feel better; that I need to ‘push past this’ and I’d feel better; that maybe it is something to do with feeling down, lacking in self-esteem or motivation and working on those things would make me feel better. I’m sure you’ve heard similar theories yourself.

Yesterday, I had told him that I was feeling better than a few (very bad) days ago, but not brilliant. In response came something like “Come on, where’s your positivity, you feel great – positive mental attitude woooh…” and then “If you opened up your mind to being a bit more positive, you might find yourself feeling much better!” There were a few suggestions on Twitter as to what I should have said/done at that point. I wanted to tell him that willing myself better with positive thinking would probably be as successful as him sitting on the sofa and willing himself to telelport to work – you might be able to visualize the result but the physicality of the situation doesn’t change…

But as much as I wanted to tell him where to go, I simply walked away.

Still, I was absolutely fuming. It hurts when somebody, who has seen some of the toughest trials I’ve had over the past few years, can be so insensitive and miss the point entirely. This is someone who had to carry me into hospital because I couldn’t even stand. Maybe they can see and sympathize with those instances but switch off when there is no quick and easy fix apparent? Maybe conditions like Still’s just take up too much of people’s sympathy and patience, meaning it switches off after a certain time span?

I know that people will never be able to see things from our point of view entirely, without becoming chronically ill themselves, but it would be nice to see some evidence of them trying to understand. Another idea that surfaced on Twitter was a futuristic gadget that allowed people to experience just what it felt like to be that person – their level of pain, fatigue, stiffness etc – all the things that it is hard to compare with even like-bodied people. I wonder what such people would have to say? Would it shock them into realising just how much we go through on a day-to-day basis? Years of the same pain and malaise; at a level you’d hope not to suffer over weeks, never mind for your entire future.

How many of your friends and family would agree to trying such a gadget? I know there are some who would jump at the chance to understand things better but others, I’m not so sure. And doctors – how useful would it be to show doctors how you were feeling without having to worry about getting it wrong and misleading them; without the fear that they may think you were exaggerating?

The funny thing with what was suggested to me yesterday, about being more positive, is that I’ve actually been accused of being too optimistic by other people. Some feel that I need to be more realistic about the severity of my illness, that I need to realise I may never get back the quality of life that I keep striving for. But as hard as things get sometimes, I’m still not willing to give up; therefore meaning that the person who suggested I get a ‘positive mental attitude’ doesn’t seem to know me very well.

That hurts too.

One of my main worries is that I’ll start to be identified or characterised by my illness –  that people will only see the struggle, the bad days, the moaning, the things I can’t do, the places I can’t go, the events I can’t attend, the letdowns and no-shows, and they’ll be the only things associated with me. The only way this won’t happen is by surrounding myself with people who at least try to understand.

But what do you do if somebody doesn’t? Do you have a conversation; write a letter or do you leave it?

Let me know what you think,

L

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1.The illness I live with is:  Mainly Still’s Disease, but I also have Gastritis / GERD (probably from too many meds over the years) and Hidradenitis Supporativa. Before Still’s Disease, my diagnosis was a similar condition called Dermatomyositis and I still get symptoms from time to time.


2. I was diagnosed with it in the year: 
1997 at the age of 15.

3. But I had symptoms since:  I was 3 years old. I was treated by a Paediatric Rheumatologist for Reactive Arthritis, but in hindsight my symptoms definitely matched Still’s Disease. I went into some sort of remission between the age of 7 and 14, although I still experienced a lot of pain.

4. The biggest adjustment I’ve had to make is:  To accept that I have limitations and that even if things aren’t impossible, they will probably take longer and be harder to achieve. I have to constantly adjust my dreams and expectations to fit in with the Still’s and my life doesn’t always go how I want it to. I can’t take anything for granted; even getting out of bed in the morning isn’t a sure thing these days
5. Most people assume:  I worry that people assume that I exaggerate my symptoms and enjoy the attention that comes with being sick and/or wallowing in my own misery. That maybe they think it’s just laziness or feeling a bit low and if I tried harder I could make myself feel better. A lot of people compare their tiredness / aches and pains to what I go through, which can feel patronising too. Pain and fatigue are so difficult for other people to understand.

6. The hardest part about mornings is:  Trying to sit up in bed, I tend to seize up when lying flat and find it hard to get upright. Once I’m propped up I can start to loosen up the stiff muscles and joints but it can take a while.

7. My favorite medical TV show is: I don’t really watch any, I spend too much time around hospitals and doctors as it is!

8. A gadget I couldn’t live without is: My laptop and blackberry.

9. The hardest part about nights is: Trying to get comfortable and turning over.

10. Each day I take __ pills & vitamins. 30+ tablets throughout the day (that includes multiples), plus a multivitamin.

11. Regarding alternative treatments I: Would like to try more. I don’t think they can cure the illness itself but can help an individual to cope with it better through relaxation, strength of mind etc. I’ve tried Reiki and did find I felt recharged afterwards but I think this was mentally rather than physically. If something can be enjoyable as well as relaxing, I’m sure we must benefit from that.

12. If I had to choose between an invisible illness or visible I would choose: I’d probably choose invisible. Even though I do get frustrated that people don’t understand my illness at times, I’m still glad that I can choose who I share and explain things with, especially in those rare moments of wellness when I just wanted to get on in life.
13. Regarding working and career: I feel I could have achieved a lot if I hadn’t had to deal with all this. I did manage to work fulltime for a few years but I don’t think I will be able to do that for a while, if ever. I am trying to think of ways I can earn money at my own pace by doing something I enjoy, such as writing.
14. People would be surprised to know: Just how much my future can scare me, especially at times like these when there seems little hope of even controlling the Still’s.
15. The hardest thing to accept about my new reality has been: Recently, the hardest thing for me is that I might never have a family of my own. I always thought I’d have children but can’t see how that would be possible with all the toxic drugs I have to take, the energy it takes to raise children once they’re here and then the ongoing pressure that chronic illness puts on everyone involved. Flares are always going to happen. I’m not sure it would be fair even if it was possible.

16. Something I never thought I could do with my illness that I did was: I managed to graduate from university with a first class English Literature degree. I started three times and had numerous flares but I stuck with it and loved every minute. I’m very proud of that and have considered returning to do my MA at some point in the future.

Physically, a few years a go and during a good spell, I actually managed to get to the top of a climbing/abseiling wall. Something I’d always wanted to try. I guess I need to hang on to these things because there might be another good spell coming one day, who knows.

17. The commercials about my illness: We don’t advertise illnesses or medication here in the UK.

18. Something I really miss doing since I was diagnosed is: Exercising, especially horse riding. Between the ages of 7-14 I was actually very active and good at sports. I’d love to just be able to get on my bike and head off on a sunny day, or take a walk without calculating how tired/sore it would make me. I’d love to give new things a go too, without being scared of hurting myself. I like being outdoors, I’m pretty adventurous in my head, I just wish my body were up to it.

19. It was really hard to have to give up: On some of my dreams. And I know you should never give up on dreams but sometimes you have to be realistic. I always wanted to travel the world and to work with overseas charities, building schools and water supplies, teaching English that sort of thing. I wanted to make a difference, not to be stuck in the house all day. I guess never say never but it seems unlikely.

20. A new hobby I have taken up since my diagnosis is: Blogging, cross-stitch, baking when I can.

21. If I could have one day of feeling normal again I would: That is a tough one. I’d love to get up early to see the sun rise then go on a bike ride or long walk, somewhere beautiful, with all my friends and take a picnic. Maybe go to the beach, have a swim in the sea and a barbeque, then as night draws in, sit by a fire chatting and laughing until the early hours and just enjoying life. Someone would be playing a guitar somewhere and singing… I don’t know who though because none of my friends do, I’ll just have to adopt someone for the cause.

22. My illness has taught me: That there is no such thing as normal and we all need to live at our own pace. To treasure the things that are really important, like friends and family. I’ve lost a lot of friends but also learnt that the few who stuck around are worth ten of the other; definitely a case of quality over quantity. That as hard as it is, you can adjust your life with each circumstance change and fallback. There is always some way to make your life worthwhile, even if at times it doesn’t feel possible you have to hang on to that thought.

23. Want to know a secret? One thing people say that gets under my skin is: I think the only person who really gets under my skin is my future Father in Law, who seems to believe if I did a bit more and pushed past all this I’d feel better; that it might all be down to feeling a bit depressed. He doesn’t understand it is physically impossible to push past any of this and that I have had to learn not to overexert myself; that I would love to be a part of that world out there; that if I could, I would.

Oh and I hate being asked every day if I’m any better. I know it can be well-meaning but I feel terrible that I can’t give a more positive answer. There is a lot of pressure behind that question.

24. But I love it when people: Do listen to what I’m actually saying when I want to talk and make an effort to understand.

25. My favorite motto, scripture, quote that gets me through tough times is: The one thing that comes to mind is ‘this too will pass’.  In my experience, most things do. They might come back, but they’ll pass again.

26. When someone is diagnosed I’d like to tell them: To find a good doctor, one that you trust and who respects you as a person not just a patient. I think this has made a massive difference in my attitude towards living with Still’s Disease.

27. Something that has surprised me about living with an illness is: That I can still (for the most part) be happy and I guess it might have had some positive effects too. I don’t want to sugarcoat things but I wouldn’t be me if I hadn’t lived with Still’s.

28. The nicest thing someone did for me when I wasn’t feeling well was: So many to mention, from flowers, cards and gifts from good friends wanting to cheer me up, to romantic meals in bed cooked by my fiance… I was really touched that after such a hard year for us both, he whisked me away to Paris on my birthday and asked me to marry him, showing me that despite the pressure of coping with an illness like Still’s, he’s in it for the long run.

I’m very lucky to have such good friends but there is one in particular that puts herself out so much to try and make me feel better. I hope she knows who she is 🙂

29. I’m involved with Invisible Illness Week because: I think people are starting to become more aware of Invisible illnesses, especially amongst young people. That’s really exciting. I hope we can get Still’s Disease some recognition eventually too.

30. The fact that you read this list makes me feel: Grateful that you took the time to try and understand a bit of what my life is like. As I said earlier, jut to know that someone tries or wants to understand, means a lot. Thank you.

Have you posted your Invisible Illness Week survey yet? Send me your username/the link to your post and I’ll list it here for others to read!

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Just a quick update on what happened with the GP yesterday, regarding the antibiotics MAU gave me for my “Kidney Infection”. Unable to get out to the GP surgery itself, I managed to speak to him over the phone about my concerns that the antibiotic Trimethoprim had made me violently sick the other day. I basically wanted to know if he thought it was the antibiotic and if so, was there a different one (that I’d had before) I could take instead.

The first thing he commented on was that he was surprised I had a Kidney Infection; he had taken numerous urine samples in the weeks leading up to me finally going to hospital, including 2 days before, and all had been clear.  I told him that I’d also had a clear sample earlier in the morning at A&E and you know what his opinion was? That they were simply confused by my symptoms and decided to treat what diagnosis they ‘fit’ best so they could move on to the next patient. He admitted that he was baffled by the symptoms too, but that with my medical history, he would have erred on the side of caution and run more tests/observations until my Rheumatologist returned.

Anyway, those things aside, he wants me to continue with the Trimethoprim as there are no other antibiotics I can take that treat Kidney Infection and the risk of infection is much greater than the risk of me being sick, no matter how violently. He did prescribe me some Buccastem, which are supposed to help nausea and sickness and I already take Metaclopromide, which should help too.

I took a tablet last night and one this morning and have been okay so far. I think tonight will be the decisive point though as it was after a day and a half / three tablets that I started to feel unwell last time. Hopefully, it will just have been a coincidence and I’ve nothing to worry about. I just need to keep myself going until Monday, when I can speak to my Rheumy again.

Still no news from the Professor.

L

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I feel like I’m neglecting the blog and my other projects recently but I’m suffering from lack of motivation and I think probably some depression too; ironic since writing here has actually helped me deal with things in the past.

Since my last post things have probably got worse rather than better. On top of the Still’s flare symptoms, I have had this terrible pain in my left side / stomach, which gets worse on taking a deep breath, coughing, sneezing, hiccuping (I never noticed how many tiny hiccups we naturally have during an average day until now – ouch!). That’s been there for about three weeks now, getting gradually worse, until I could feel it in my back to the left side, then it changed again and I could feel it in my back on the right side.

I saw my GP a few times regarding this pain – his first suggestion was muscular pain, the second time he felt it was nerve related and so prescribed Amitriptyline. Each time he took a urine sample to make sure I didn’t have an infection or something going on.  Finally, on Friday it got too much and I called my Rheumatologist to tell him I was getting concerned and he arranged for me to be seen in the Medical Admissions Unit. To cut a long story short, we had a long wait to eventually be told it was a Kidney infection after my second urine sample (the first being clear?) showed blood and protein and I was swiftly sent home with some antibiotics. They wouldn’t perform any abdominal scans since I’d had some back in February, so to me this was just an educated guess.

I wasn’t completely confident in this diagnosis, as I know that my Kidneys can be involved with Still’s flares too. I have had blood and protein show up in urine tests because of high levels of inflammation and cell damage; I used to have the dipsticks and had to keep a diary at one point. However, I was eager to get rid of the pain so I took the meds as prescribed.  A couple of days into the antibiotics I started to vomit violently and it was always a thick, sludgy green. Considering that throughout all this I was sore and stiff all over, with temps coming and going, it all felt too much and yesterday I just didn’t know what to do with myself. In the end, the only way I could get comfortable enough to just lie in bed was to keep taking my Oramorph hourly (when I could finally stomach it), something I haven’t had to do for months.

And that’s where I’m up to today. I haven’t taken the antibiotics again in case they caused the vomiting, but have left a message with the GP receptionists to see if I can get a different type that I’ve tried before. I’m keeping up with the morphine and have increased my Presnisolone further – I am that desperate for some relief. My Rheumatologist is away until Monday and I’m starting to feel that he is the only person to listen and to see the picture as a whole rather than jumping to conclusions. Not that I think it is easy for doctors when faced with a complicated condition like Still’s Disease and all it brings with it, I just wish they’d give a little more time and consideration. But hey, that’s a different story and maybe a different blog post.

For once I’m glad the week is passing quickly. I just want some answers and some relief.

Hope to resume normal blogging activity at some point in the future,

Until then, take care

L

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The Good:

This time last month, things were pretty good. I was planning a phased return to work in September and looking forward to celebrating our engagement with a family party and making a start on plans for the wedding. I was even considering trying out an old hobby of mine – horseriding – just for half an hour a week, to give me a bit of pleasure. My blood results were good, I felt strong and pain-free, able to reduce both my Prednisolone and Morphine at a sensible rate – it felt like I might get a taste of normality again.

The Bad:

I was getting a lot of headaches and migraines, which my GP doctor put down to Sinusitis and treated with a course of strong antibiotics. I thought that was the end of it, until I started getting other symptoms – fevers and chills, throat pain, muscle tenderness, dizziness and fatigue. Again, I spoke to the GP and was told that it might be a virus and to sit it out. Then over a weekend I suddenly became much worse and realised the niggling ache in my hips had worsened too, to the point where it was difficult to get out of bed or stand up. By the time Tuesday came round – infusion day – I could barely walk and my left elbow was once again hot and stiff.

The Ugly:

I still thought it was a virus that was setting me back a  bit, but when I got to the ward and had my bloods taken etc, the nurses decided to put the infusion on hold until my Rheumatologist had seen the results and spoken to me. We waited hours. When he finally came down it was with bad news, not the news I’d have expected (that I couldn’t have my infusion due to infection) but that he felt I was no longer responding to the Infliximab. My blood results were pretty shocking and suddenly all the symptoms made sense. I don’t know why it didn’t even cross my mind, I just thought we’d got on top of the Still’s.

What’s more, my Rheumatologist feels we’ve exhausted all the treatment options available to us. I know there are some drugs we haven’t specifically tried, but I’m guessing this is because something similar didn’t help. He doesn’t know what to do with me and so feels it’s time to get the opinions of some other specialists in the field, including a Professor Moots in Aintree. It’s possible there may be a drug trial I can take part in or even that we try a combination of two biologic treatments, although this is unchartered territory. Until then, we stick with Infliximab and it’s back up with the Prednisolone *sigh*.

Obviously we are devastated at the news that the Still’s has flared again; it feels like a massive kick in the teeth, especially with all the hard work I’ve put in with Physio etc and how far I improved. I saw a lady using a zimmer frame on the ward later on and promptly burst into tears. I don’t want to go back to that again. January – April were such hard, dark months for us, but I pulled through because I could see a light at the end of the tunnel. It’s harder to see this time round and I trust it less, after having it snatched away so quickly.

Anyway that was almost a week ago. I improved for a day or so after increasing the steroids, but seem to have reverted back to flaredom over the weekend. Yesterday, I could barely move until about half past four and couldn’t get comfortable in that time either. I can’t even increase my morphine just yet, until we know if the extra steroid is helping.

So that’s how things stand right now. Needless to say, returning to work has gone out of the window for good, while I focus on getting myself well again and maintaining that wellness. Maybe I expected too much of my body too soon?

L

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