Waiting, waiting, waiting!

When you are chronically unwell you spend a lot of your time waiting.

Some people spend years upon years waiting for a diagnosis; 

you wait in doctors’ offices; 

wait for appointments to come in the mail;

 wait for phone calls to be returned;

wait to hear what the next treatment plan is.  

You wait to feel better…..

you wait for symptoms to lessen; 

you wait for medications to take away your pain;  

You wait until you feel strong enough to get out of bed in the morning.

You wait for that day when things won’t be this hard.

I’ve been spending so much of my time these last few weeks waiting. I attempt to be proactive and take control and then feel frustrated when I am reliant on a body that does not want to cooperate; symptoms that will not go away and doctors that are scrambling to try and work out what to do with me. I just want someone to firmly take control and say ‘Liv this is what is going on and this is what we are going to do about it’….but I am still waiting for that to happen. 

I am pretty used to putting my head down and just getting on with things the best I can. I try not to make a fuss and stupidly feel guilty about bothering my doctors. If I reacted to every pain and every symptom I have I would never leave my doctor’s office but there are times when enough is enough and I need help. At my most recent appointment with my rheumatologist  nurse she could instantly tell how unwell I was through the change in my demeanor. She said to me that I am usually so bright and bubbly so seeing me withdrawn, teary and worn down she knew my quality of life was being severely impacted. It’s ironic that the times when I need to be my best advocate and communicate well are also the times when doing that often feels impossible. Even when I am able to do this I learn there is no quick fix or easy answers. My health is complicated and complex. I feel helpless and out of control. 

The best way I can try and relate this helplessness feeling in a way you might understand is like the feeling you get when you are very unwell with some kind of bug and it just wont go away so you go to your doctors. During your visit you explain your symptoms hoping they will be able to prescribe a quick dose of antibiotics to make you feel better.  After the doctor looks you over you are told that its viral and you are going to have to ride it out. No medicine, no quick fix just live with it. You are desperate for the doctor to make you better!  Sadly Lupus can’t be fixed with five day course of antibiotics and there is only so long you can wait before symptoms need prompt action. 

This morning I found myself waiting yet again. I woke up with a knot in my stomach knowing I had to make a phone call and update my nurse on what has been going on these last few weeks. I psych myself up make the phone call but she is not there so I leave a message for her to call me back. Then I found myself sitting around trying to work out what to do. I knew if I left to have a shower she would call and then we would spend the rest of the day playing phone tag. As I was about to give in and go and have a shower she called. After explaining what has been going on and how I'd done everything on my end and asking what to do now I knew what was going to happen…can you guess? More waiting! Now I wait for the Rhemuatolgist to get back to my nurse and then she will get back to me. Even when you are proactive there are not always quick answers. I know now I have done everything on my end so I can only hope I hear back soon. This is just another part of being chronically unwell.

Truth time…these last few weeks have been awful. Last Monday I sat in my GP office with Dan and was told my options were to be admitted to hospital yet again or to try and increase some of my medication with the likelihood that it wont help but maybe give me some relief. I say how much I want to avoid hospital, how mentally I know I do not have the strength to deal with that again so we opt to increase my medication. I just feel so fragile both physically and mentally that we know it wont take much to cause me to crumble. Although I felt awful I still felt safe and in some form of in control at home so we decided it would be best to try this medication with the promise that I would go to ED if things got any more out of control. So that night I increase my medication with the hope that it might calm things down to find that it only makes me feel worse. Typical!! I don’t know if I’ve talked about it on here before but I’ve also been diagnosed back in 2013 with something called ‘Inappropriate Sinus Tachycardia’. In very simple terms (please google if you want to know more) for some unknown reason (probably Lupus related?) my heart will beat incredibly fast constantly when I am simply resting and then just further increase when I attempt to do anything. It makes me feel miserable and causes lots of unpleasant symptoms. When I was in my GPs office my heart rate sitting down was 120 and that was with a high dose of beta blockers. Dan and I went for a very gentle walk and his heart rate was 57 while mine was 157! I should probably add I am also waiting on a referral back to Cardiology. The increase in medication left me feeling extremely fatigued, dizzy, disorientated, nauseous and just really weird. I waited a few days thinking maybe my body just needed to get used to it. No such luck! I rang my GP clinic and spoke to the nurse on Friday who when I explained my symptoms asked if there was any chance I could be pregnant….spoiler alert NO I am not. My GP rang me back and confirmed that it was the medication making me feel lousy. We have split my dose up to see if that will help but ultimately I will need to change as it’s not effective for my body.

So for now I find myself yet again waiting…..waiting to hear back from doctors, waiting for a plan, waiting for these symptoms to lessen and my quality of life to improve.

Waiting; waiting; waiting yet still clinging fiercely to hope for better days.  

 My parents work in education and last week there was a teachers strike and I couldn’t help but think how nice it would be to strike against my own body about now. These working conditions are rubbish, the pay is non existent and there are no holidays! I’ll tell you one thing there is plenty of though….sick days but I promise you they are so over rated.