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Posted in Personal Blog

I am rubbish at waiting, patience is not a virtue I have within me.

I always want answers, the why is always on the tip of my tongue about almost everything.

I want to know what is wrong with me, why can’t I do this, that and the other ~ who can I turn to to help me?

I am hoping my new Rheumatologist will be the “one” to turn round and tell me with full conviction what ails me. Sadly I have had to go down the private route in order to be seen as my local hospital, despite having my “urgent referral” at the beginning of January from my GP, still have no available appointments and don’t know when they will have any to book me in. They are swamped with referrals and are low on nurses and doctors to run the clinics which has created a huge backlog for them to get through before taking on any new referrals.

So today I visited my GP to collect the forms as requested by said private Rheumatologist and then onwards to my local phlebotomist clinic where I had blood taken for a whole ream of tests. The nurse taking my blood turned out to have Lupus herself and recognised my rash as being very similar to hers. She also had the same weird swellings around her ankles like mine. It was lovely to be able to chat to someone with the same symptoms and feel validated somehow that it wasn’t all my imagination.

Sometimes I feel that I am in a dream world and that I am imagining the symptoms and try to will myself better. That I can control my body and make things right ~ it doesn’t happen but a tiny part of me always hopes it will.

I have to go to the hospital again on Monday for a chest x~ray, to see if there is any damage on my lungs ~ apparently that can be a Lupus thing.

Whilst at the GP I was given another prescription for prednisolone, I started taking it on 1st December 2017 and every time I try to come off it my rash flares up and so I am to continue taking them on the low dose of 5mg.

Finally I needed to fulfil the final request and filled a small bottle with wee. I dropped that spectacular present off with the practices nurse to dip to see if it has any blood or protein in it.

Today I’m feeling really fed up, hope mingled with anxiety is causing me physical discomfort in my stomach and chest. Sort of like a pre~anxiety attack feeling, without actually going on to have the panic attack.

I allegedly have ..

  • Myalgic Encephalomyelitis ~ Diagnosed by hospital ME Clinic in January 2016.
  • Fibromyalgia ~ Diagnosed by Rheumatologist in January 2017.
  • Hypermobility EDS ~ Diagnosed by Rheumatologist in January 2017.
  • Depression ~ ongoing since 18 years old.

The thing is each of these conditions have crossover symptoms but none of them include my recent symptoms of rash and swellings. It would seem the top culprit at this time could well be Lupus ~ hence all the tests listed above.

BUT ~ what if it comes back as negative for Lupus? What do I do then?

I am particularly hypermobile in my knees and hips which explains my mobility issues. I have constant fatigue and swellings around both ankles among many other symptoms ~ oh and the damn rash!

I really want my life back, I want my energy back, I want my mobility back ~ I know I have a roof over my head and food in my belly and yes I am grateful for that. I don’t like to moan, honestly I don’t ~ this is not a case of me looking around for pity but I am incredibly fed up and impatient for answers, for a proper real inclusive of all my symptoms diagnosis. One which has a treatment protocol, for someone to tell me, Tanya ~ this is what you have, this is what we need to monitor, this is what we can treat and this is how we can help you reclaim your life.

I am sitting here at my computer, all around me is mess and it is driving me nuts but I have no energy to hoover, to dust, to clean, to walk the dogs.

I wish I had plenty of money to pay a cleaner and dog walker ~ but I don’t. I have never claimed any kind of benefit but wonder if now I may be eligible for some kind of carer or helper for around the home. IF I do ~ what diagnosis do I put down?

So yes, today I am impatient. I miss walking for miles with my dogs, music playing through my earphones, camera around neck and just walking wherever takes my fancy.

I am amazed that I am actually hoping for the Lupus diagnosis because if that is the case I have a great new Rheumatologist who is currently seeing me as a private patient (my tests above are via NHS as GP written out the forms per private Rheumatologists directions) and is willing to take me on at his NHS practice in Mansfield. A bit of a trek but well worth it for continuity of care.

I am allowing myself this moment to vent and call out to ask if any of you can relate to anything I have said or who if you have carers allowance ~ if so how did you go about it? Any tips, advice or information you may have and feel able to pass on will be much appreciated.



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