That long-awaited appointment

On Monday (it’s now Thursday), I had my appointment at the specialist clinic. Finally. I’d been waiting since early March 2019 for this appointment and apparently that is a relatively short wait as some wait years to see a specialist for one reason or another.

I had about 10 double-sided sheets of A4 to complete and there was not enough space underneath the questions so the paper was filled at the sides too. I kept thinking of additional answers so would have to keep adding to it. Then when my husband read over it to check if there was anything else he could think of he began to question some of my answers. For example, in the last month ‘do you make slips of the tongue when speaking’ and I chose ‘no more than usual’, my husband thought it ‘more than usual’. We did have a few laughs over the forms, strangely!

So the clinic was a 90 minute drive down the m4, down to the m3 then the m25. Notorious motorways for traffic but this time we were lucky both ways. However the drive did have an effect on me despite wearing my NC headphones. I think it was more the anxiety I was experiencing, adrenaline pumping through me to prepare myself for the appointment and then the rush of relief afterwards. I didn’t know what to expect or how many people I’d see. I actually only saw 1 specialist but that was enough. I experienced a dip in energy and found that her voice was a little too loud for comfort. I had to consciously stop myself wincing every time she spoke because my ears were screaming at me for a quiet space. Towards the end my brain couldn’t string a sentence together, I was forgetting what had been said and I struggled to form the words to speak. Luckily I had prepared questions which I referred to and my husband was there for moral support and also as my memory for afterwards. Oh and he acted as chauffeur!

On the one hand the appointment was positive because I finally had the opportunity to speak to a specialist in the field and ask all the questions I still had. I have now officially been diagnosed with CFS/ME and I am also ‘in the system’. Actually, I have already had my invitation to a seminar about CFS in December.

On the other hand it was also frustrating for several reasons. The information I was given (lots of bedtime reading) was exactly what I needed back in February. The support they can provide is again exactly what I needed in February. I have read about, followed though and had positive experiences of using the strategies that they suggest and offer in the form of additional support. Whilst it’s great to know that I have been doing the right things and that ‘I am doing really well’, it’s also a little too late.

The worst part is that all this happens at a clinic that for me is a 3 hour round trip. For many CFS sufferers, going for a 10 minute walk is a struggle so getting on a bus or travelling in a car, if there is someone who can drive them to the clinic (as quite frankly driving themselves would most probably be impossible) could stop someone from attending that much-needed appointment. They did offer me a telephone service if I feel it’s too far to travel which I am sure they would offer for someone who couldn’t come in person but it’s reassuring to speak face to face with someone. Whilst I think the NHS is great and I know I’ve said this in a previous post, it is also REALLY SLOW. If we had the opportunity to go private we would have done. But we didn’t and couldn’t afford it, not when I didn’t know how many hours work a week I could really manage. So a lot of people are missing out on help because they don’t have the energy or tools to do their own research or pestering their Dr (which actually I didn’t need to do).

CFS/ME is more common than you think so why is there so little provision for it? Why is there still so little understanding among medical professionals? Some still consider it psychological. Thankfully I have had positive experiences with those I’ve been in contact with as they’ve been understanding and proactive. Mental health awareness is becoming more mainstream so perhaps there is hope for CFS/ME, Fibromyalgia and the like.

So on a positive note, I know I’ve been doing the right thing. I shouldn’t let this stop me from getting what I want from life. I’ve also decided to start using my diary properly with my colour coded activities and planning in rest times to ensure I do not overdo it. I feel that on reflection I have been taking a boom and bust approach recently. My work timetable is all over the place and does not help me plan any routine to my day or week so I find in order to get things done I sometimes overdo it. Whilst I’m going to try to do what I can by starting the diary anew, I need to stay open-minded to the fact that it will not be plain sailing, at least until I break up for Christmas.

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