I am currently stuck in that awkward limbo phase that you get in between rheumatology appointments. If you have no idea what I mean, you will have an idea by the end of this and I also apologies if this ends up as a bit of a rant...I am human and positivity can only take you so far through the frustration journey.
So what is the frustration journey? Well I would go so far to say that probably 90% of us feel at some point during autoimmune disease treatment. It is the space in between appointments....for me it is usually 3 months....when if something happens or you have questions it can be really tough to get answers. This is heightened when you have test results to come in and you have an 8-12 week wait. This is quite often how you are left in the UK, I am not sure how it works in the US, but often you are living in limbo until you can be seen by your doctor.
What you should have in place to help you.
There are certain people that you should have in place to help you during the waiting time in between appointments. There should be 3 outlets as your first port of call, your GP who should understand your condition and specific needs, a rheumatologist nurse specialist whose number you should have been given and your actual specialist. Notice there is a lot of SHOULD in here as it doesn't always work out like this.
I am lucky in that my nurse specialists do answer the phone and offer some advice, even if it is simply to get you an emergency appointment if needs be. However they are not my specialist and more often that not I have to sit through the waiting. Even today I found out that a fellow lupus friend of mine, has a number for her specialist team, but the number isn't working - that is unacceptable!!!
There are things you can do if you are really in need of advice; I would always stress the importance of your GP. Mine is great and even if they cannot help with the care progression of my disease, they will listen to my concerns and speak to the hospital on my behalf. If you don't feel you are getting this level of care, then look into other GP's in your area - they are there to help YOU, so you need to be comfortable with them.
Where the frustration lies....
For me right now I am experiencing a couple of new symptoms that have just arisen, one this week. I also have two pieces of medical history that I want to add to my rheumatology report. I of course rang my nurse and of course she said to wait. On top of this I am waiting for ultrasound results which is making me anxious.
It is during these times that I get annoyed that I can't simply turn to someone and say I have all these questions and I am scared that I am getting worse. It is so hard to sit and wait sometimes; it will be the first thing I think of when I wake up and the last thing at night. This however is not healthy and not something that is going to make any difference to the time scale I have to live with.
Sometimes I just want to be able to pick up the phone, ring someone that has the answers and then rest in the knowledge of the outcomes, or simply be understood. For me it is one of the hardest things to deal with emotionally. I can handle the pain, headaches, stomach aches, fatigue and every other physical symptom thrown at me. I cannot deal with the waiting; it makes me feel isolated and trapped inside my own body - which works directly against my positive mental attitude.
So what do I do to help myself.....
If I had the perfect answer I would be a very happy girl indeed, but unfortunately I am still trying to find my feet with this one. So I shall share with you what I have learnt so far.
Starting with the simple fact that I should not worry about things that are out of my control. I cannot control how the NHS works, how they organize their visits/appointments, or how much support they offer me. This is far bigger than me and there is very little point in getting angry about it as that will only make me worse. I can only do so much, so I always start with doing what I actually can do. I will ring my nurse, I will speak to my GP and if they say waiting is the only answer then I shall wait.
This is sometimes easier said than done. So when I get really stressed out about the lack of support I will turn to distraction methods. This maybe a good book - they always help me to escape for a little while, I will talk about my frustration to loved ones and I will write to you guys. Anything that can turn the situation from being a negative into a positive.
Next I will write every little thing down with the date next to it. That way I can keep track of what I need to ask at my next appointment. This also helps when I do get to the next one, sometimes I put things down that aren't even relevant anymore. So this is one tool that helps me get through to the real nitty gritty.
Lastly I need to rest and recuperate. The more stressed out I get myself, the more likely I am to have a flare up. So when the frustration kicks in I need to make sure my diet, exercise and sleep patterns are all in place. This will usually mean earlier nights, sometimes at 9pm so that I can get a full nights sleep. I will cut out fatty foods, sticking to fresh vegetables and up my fish intake. Finally I will make sure that I get out into the fresh air every day - even if it is raining. This will help me to breath easier and relax my brain.
I know I am not alone in feeling like this, it is just so hard sometimes to keep your chin up!
