Where I am now

I haven’t really written an update in quite a while unless you count the skiing post. Asthma-wise I am doing pretty good. My peak flow isn’t the best and has been hanging around the 300-330 mark for the last month or so but I blame the cold I have had for the last month for that. Whilst my peak flow isn’t the best, my asthma symptoms themselves are doing pretty well. I haven’t really woken up in the night because of my asthma in quite a while, although my parents still complain about some coughing in the night which leads me to believe that my asthma isn’t fully controlled but we are getting there. My main issue at the minute is that I cough right after I take my Symbicort and the coughing can last for up to 2 hours which isn’t great. It took me a while, but thanks to some Ventolin before Symbicort, I have worked out that it IS the Symbicort that is making me cough, although I have had that suspicion for a while. The same thing used to happen when I was on Seretide (Advair) so I think the coughing is due to the fact that Symbicort is a dry powder inhaler (DPI) rather than the actual medication itself.  On Monday, on advice from a friend, I am going to ring my GP and ask to switch Symbicort to something else in meter dose form. I am actually quite sorry to see Symbicort go because it has made a real difference to my lungs so I am going to see if there is a meter dose form of Symbicort available in the UK before I ask about switching medications. If I do have to switch from Symbicort to something else though, I am definitely going to try and stay on Formoterol (the LABA component of Symbicort) because although Formoterol makes me shake, I have found it works so much better for me than the Salmeterol (another LABA) did in Seretide. I know that there are other combination inhalers available in the UK in the form of meter dose inhalers (MDI) such as Flutiform and Fostair, both of which contain Formoterol so hopefully my GP will support me and let me change to another medication without going to see him first. Unfortunately Durela (Zenhale) hasn’t been approved in the UK so I only really have 2 options of combination inhalers unless it is decided that I should go back onto separate inhalers and take the ICS and LABA in two separate inhalers, which I guess is always an option. Although, I have a feeling that my GP would prefer to opt for another combination inhaler due to ease.

Joint-wise I haven’t been so great. As I am sitting here writing this, I am insanely aware of my thumb which has decided to swell up. It’s quite ironic that I am writing a presentation for college about Rheumatoid Arthritis and the joint I am talking about in my presentation is the one that is swollen. Other than that I have been having quite a lot of pain in my knees and ankle, in fact my ankle is quite puffy and has been for the last few days. I’m not too sure what has caused that, if anything. My elbows have been a bit achy, on and off, so I am keeping an eye out for a flare and last night my wrist was giving me a lot of trouble too which it hasn’t done in a while. I have been having a horrible time with my bursitis and ligaments lately too, my hip is almost constantly warm to the touch and my knee ligaments are often swollen so if this doesn’t resolve soon, a trip to the GP is in order. I have been really tired lately too although I don’t know if that is because I have a flare coming on, or because I have been so busy. In the last 4/5 weeks I have had 3 interviews, 3 days of work experience and a week of skiing so it really isn’t any surprise that I am feeling under the weather, but I am still worried that I am going to have a major flare.

As for hydrotherapy, there has still been no word on that, not a letter or a phone call. Nothing. So that is another job to do for Monday, I have been patient for 2 months, that was plenty of time for them to get sorted but clearly not, so a phone call to chase them up is needed. Although I am fortunate that I live in the UK and don’t have to fight insurance companies tooth and nail for treatments and to actually see doctors, I am getting really tired of being messed around by the NHS. At one of my interviews we had to discuss a scenario “a patients has had surgery 2 weeks ago and was promised outpatient physiotherapy  once diagnosed but has phoned to say nothing has happened.” We had to talk about what had happened to cause such a delay and why there has been such a delay in the initiation of outpatient treatment. It was actually scary how much I could relate. No, I haven’t had surgery but nothing has been happening… My Rheumatologist promised me physiotherapy once, but that never happened despite phone calls and it wasn’t until 5 months later, when I got to see a physiotherapist who I was already under, until I could get something done about my neck. That same Rheumatologist promised me an NSAID although it wasn’t until 2 years later that I actually found out that the NSAID had been prescribed and my GP practice had failed to tell me about it. Those are just a few examples of what I am not happy about, in fact I am actually quite angry by the way I have been treated by these certain health care professionals in the NHS. Once you are out of sight, you are completely out of their mind.


6 thoughts on “Where I am now

  1. I feel your pain with the nhs. Sorry to hear how things have been going. For some strange reason I didn’t think you lived in the UK x

      1. I know, it’s ridiculous! Although research doesn’t really matter when you can’t get any treatment. The US seems to be doing the best with research in my opinion.

  2. Are you taking anything for the arthritis pain/inflammation? I am sorry you are experiencing so much pain! 😦 If it worsens, I agree with going to the doctor. Good luck with your presentation on RA! Perhaps you can let us know how it goes and how people respond to it. 🙂

    1. Erm right now I am relying on Ibuprofen and Paracetamol for the pain and swelling, I can’t take my prescribed NSAID because of the side effects. I’m hoping that I can get into hydro soon but if not I think I will have to go to the GP, especially since I have to wait till May to see my Rheumy.
      And of course I shall let you know how people respond to my presentation 😉
      Hope you are well!

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