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Posts Tagged ‘Feeling Low’

I can see my toes again!

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We made some progress today, in that I was able to sit up a bit more and eventually moved into a special reclining chair that one of the lovely male nurses managed to wrangle for me. This proved to be a fantastic help over my remaining days in hospital; it was remote controlled, raising and lowering as well as reclining, and so I was able to sit/stand without bearing too much weight through my hips. It was also a lot more comfortable than being stuck in the bed all day, with my legs stuck out in front of me; it’s surprising what relief a change in position can bring. Now that we knew there was no damage to my spine, I was able to switch between the two and make further steps towards getting myself more mobile – things were looking up.

And then came the ward rounds.

My Rheumatologist’s Registrar came to see me with a few other curious doctors. He told me that there was no infection present in the fluid they had taken from my hip on Friday and so it was looking like the Synovitis and Joint Effusion was down to an exacerbated Still’s flare.  He said he believed that the Still’s was getting worse because the Tocilizumab wasn’t working, despite the improvements to my bloodwork. He then went on to say that that the problem was, I had tried all the different mechanisms of drugs by this point: Enbrel, the anti-tnf, Anakinra the il-1 receptor antagonist, Abatacept the T-Cell inhibitor and Tocilizumab the il-6 receptor inhibitor.

As a result, he said I had run out of options and that my main hope was for them to look into future clinical trials that may include Still’s Disease patients. He mentioned the possibility of returning to anti-tnf therapy but felt that there was only a limited chance that I would respond after forming antibodies to Enbrel previously.  I was lost for words and he went away leaving me in a lot of doubt and feeling quite scared about the future. I have always known that my Still’s Disease was difficult to treat and did not follow the typical pattern; my Rheumatologist and I had often joked about how complicated I was, but we had always had a plan of action, another drug in the pipeline if the current one didn’t prove a success. I had always had faith that we would get on top of things eventually, even if it was a long, hard struggle to get there. Was I wrong to be so positive, naive even?

For the rest of the day I was out of sorts; I became tearful when I needed help from a nurse to go to the toilet, frustrated with my dependence and disability all of a sudden – was this going to become the norm for me? I spent a lot of time talking to my friends and family about it and they reassured me that I needed to see what my Rheumatologist said first; as I said before, he had always kept me optimistic about my future. He came to see me at about 6pm that day; I can’t remember the conversation now but nothing he said made me feel like a lost cause. Instead, he suggested that we persevere with the Cyclosporin a bit longer (with the Tocilizumab), since that had always brought some level of control in the past and I had only been on it for a few weeks at that point – some of which may not even have counted, since it is possible I may not have absorbed any medication while I had chronic Gastritis.

He admitted things were pretty dire and couldn’t offer me any guarentees, but he at least didn’t make me feel like I had completely run out of options.  I was able to relax a bit more and focus on the here and now again, taking small steps towards getting back on my feet and home – washing at the sink, using the toilet, getting between the bed and chair on my walker etc.

But I have to admit, the Registrar’s claims have been niggling away at me ever since.

L

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Today, I do not feel strong, or optimistic or able to cope with anything life throws at me. I feel weak and vulnerable and sad for the things I’m not or can not do.

Nothing has changed physically; I’m in no more pain than I was yesterday, I haven’t had bad news or an experience that brought these things to light. I literally woke up feeling this way, like everything was too much to bear today. I do have an idea of what’s causing it, since it only ever happens at this time of the month and it’s good to know that there’s a reason. But it doesn’t make these thoughts and feelings any less real or unpleasant.

I lay down and had a good long cry earlier on, for everything and nothing all at once. I didn’t try and hold it in, I just let myself cry for it all: for the child that had to grow up different, for all the pain and tests and hospitals and doctors and medication that ‘nobody’ else has had to put up with, for having to consider the Still’s in every decision I make, for not always being able to make the decisions I want, to do the things that I want to do, or to be the person I want to be; for feeling left behind as others progress with their careers or families, for feeling trapped by all of this and more and wondering if I’ll be caught in this cycle for the rest of my life…

I felt better afterwards; it was cleansing – as if a huge pressure had disappeared from my chest, one that I hadn’t even realised was there. That’s why I know it is important to let yourself feel these things when they surface and to work through them, because if you don’t, if you try to block them out and push them to the back of your mind, that pressure will build up until it’s unbearable.

I know that I won’t feel this way for long, that I don’t really believe that nobody else has to put up with the things I do; or that things are so hopeless and full of doom and gloom. But it’s as if only considering the lowest possible point makes it possible to realise all that. Maybe sometimes, you have to feel a bit sorry for yourself, to be able to give yourself the comfort you need.

And in the end, the comfort I needed was a cup of tea (with a few drops of rescue remedy), a cosy dressing gown, hot water bottle and a nice long nap.  I woke up feeling so much better for it all, it was almost as if it never happened.

So my advice, when things just feel too much…

Don’t try and ignore it and muddle through. Give yourself a break and some time to yourself to acknowledge how you feel and face those demons; and hopefully, in facing them, you’ll realise that they aren’t as scary as they first appeared.

L

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It only happens from time to time, but today is one of those times – A bad day, when I feel like curling up in bed and waiting for tomorrow, even though the sun is shining outside.

It doesn’t help that it’s nearly that time of month again, as that makes everything worse inluding pain, moods and fatigue.  And today my pain is definitely worse, although nothing has changed to cause this; joints are generally aching, my left shoulder and elbow are sore, stiff and swollen to the point where moving them is a no-no; my mouth and tongue are rife with ulcers and then the Hidradenitis / Pilonidal problem seems to be flaring too, with a third site developing very similar to the one I’m having surgery on.

Which brings me to the second cause for feeling low.  I’d been feeling pretty okay about this surgery until a couple of days ago, when it suddenly hit me what it was I’d be going through – it isn’t a major operation but it is in a delicate area, so it will be a ‘leave your dignity on the doorstep’ situation. Obviously, I’m worried about the fact that it is probably going to hurt too, even though it should mean less pain in the longterm. Mainly though, I’m worried about complications. Things never seem to be straight forward for me; but I hope to God that this time they are, because I don’t want anything to get in the way of enjoying our New York trip.

For some reason, the fact that I have to be dropped off and can’t even be accompanied to the ward bothers me more than it has in the past too. I’ve had surgeries before and the procedure has always been the same, but it didn’t seem to bother me then – so why now? Maybe because it is a different hospital to the one I’m used to? I didn’t have the best of experiences last time I was treated ‘elsewhere’ after all.  Maybe I’m just feeling a bit more fragile than usual too; whatever the reason, I hope I get over it by Friday.

Anyway, I’m going to try what I usually do when I feel down and that’s wallow in it for a few hours and then snap myself out of it; I’ll lie in the sun for a bit, paint my nails, listen to some music, watch a girly film, eat some chocolate… – anything to perk myself up – and hopefully tomorrow will be a better day.

L

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Perhaps my bubble is about to burst...?

After everything that happened at the hospital yesterday, I was feeling pretty confused and disheartened, plus I was absolutely exhausted.  Hospital visits do this to me – so much energy is put into preparing myself for them: thinking of the things I need to discuss, prioritising a host of symptoms, making notes and then trying to make sure I express everything that I need to clearly… and then in the appointment itself, taking in what the consultant says, absorbing and digesting it, understanding what it means for me and thinking about the consequences of any decisions on the present and the future. 

When I’m flaring, I go to these appointments with a sense of anticipation, that maybe my doctor will have a new solution, a miracle up his sleeve that will make me feel better – something solid I can take away with me there and then.  Although, realistically, I know that this isn’t how the game of treating Still’s Disease goes – it’s more like snakes and ladders, just as you think you’re getting somewhere, you get sent sliding back down to the bottom – so perhaps I’m setting myself up for disappointment each time. We try to keep our discussions positive, but at the same time you can’t shake the feeling of uncertainty about it all and I always leave feeling like I’ve been through the wringer, with my mind whirling and body exhausted.

However, I woke up this morning feeling more like myself, determined not to let this latest setback get me down; yes, the things we discussed were worrying and confusing but at least I was feeling more able to do certain things and surely I need to make the most of that even if I can’t explain it. Maybe the bloodwork is just taking its time catching up, I don’t know, but I was happy just to carry on and know that my doctors were keeping an eye on things.

Morning and early afternoon passed by fine; I’d managed to get a few things done when I noticed I was getting quite a bit more pain in certain joints.  Half an hour later, I felt it was bad enough to require an additional dose of painkillers (I try and stick to 2 doses a day) and as my heart was racing too (156 is high even for me), I decided to have a bit of a nap.  I must have dozed off because it was teatime when I woke up, but I quickly realised that the pain had gone even worse, so much so I couldn’t lift my head from the pillow or move my arms from under the duvet, every inch of my body seemed to burn or throb with pain.

In the end, I needed help to even sit up in the bed and later to hobble about. My boyfriend’s parents were understanding, but I felt embarrassed and ashamed that they had to see me so helpless, especially when it came out of the blue. How can I explain it to them, if I don’t understand it myself? There are a number of thoughts floating round my head right now – could it just be that I’ve been building up for another Still’s flare these past few weeks, has the Methotrexate effected me in some way or maybe even the Orenia? Or has my mind been playing tricks on me all this time?

Do you think it’s possible to think yourself better, even if you’re not?  I was soo looking forward to starting Orencia that maybe I built my hopes up so much that I believed it was going to help and expected nothing less.  Perhaps I imagined the tipsiness, the tingling and the new strength and energy, getting through the wedding weekend on optimism and willpower alone. What if it has just been a case of mind over matter so far, and now that I’ve been faced with the reality of my bloodwork the illusion is shattered and it’s just not enough to keep the physical things away anymore..?

There are no easy answers. All I know is that I haven’t hurt like this for a while and I’m at a total loss what to do.

L

Ps. Most of this post was written the morning after, I was just too sore to even type last night.

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