Intellectual Bohemian

We have moved house!

We have moved from a 1 bedroom flat, in Raynes Park, South West London, to a 3 bedroom flat in Coulsdon which is south of Croydon in South London. We no longer have a London phone number, we no longer have a six lane road outside our front door! We now live on a quiet residential street, we wake up to a view of horses on the opposite hill from us and have already been visited by a badger!

In short, a new and exciting stage in our lives. We have two new kittens and are happy.

You will get more info on the house, the area, and the cats in the coming days.

Yesterday, Hazel and myself, had a lovely day out. It started with an appointment with the docs in the morning. It was decided that, rather than change or add to Hazel’s medications, it would be best for her to start reducing them as the combination she is on could be causing the problems she is having, or as the doc put it she’s on “too many mind benders.”

After this we went to Brighton for lunch. This is a favourite journey of ours and it provides a welcome break and relief from the mundane activities of being at home.

In Brighton Hazel has been visiting a healer to help her with the illness and her mental problems. This has been really useful to her and, I think, has helped speed her recovery up.

Whilst I was waiting for her to finish her session, which was in a part of Brighton called The Lanes; I found a sign with Tourist Information on. It was given a potted history of The Lanes, and a number of quotes from famous historical figures and authors about The Lanes, but one were in prominence. I found this quote to particularly apt for the use we had found for The Lanes.

The Lanes 1, originally uploaded by NeilD.

In case you can’t read it, it says the:

“A fine place to restore your health, or when suitable braced, ruin it again,” by J.B. Priestley.

I’ve been off school this week for our half term holidays. For those of you not in the UK, we have three twelve week terms with a week off in the middle of them, we also get two weeks off for Easter and Christmas, and six weeks off over the summer. The school year runs from the first week of September to the third week of July.

I have mainly spent this week resting and doing odd jobs around the house. Hazel hasn’t been too well though and we are going to the docs tomorrow to see about changing some of her drugs. Fingers crossed for a useful change.

My routine has been really messed up, and that’s the excuse i’m sticking to about why I have missed a few days in my February Challenge.

We are back from Hazel’s trip to Doc Gut today and it was a really weird experience.

At first he seemed very rude and offish, not wanting us to be there at all.

When we were called into his room there was no greeting or introduction, just a rather abrupt, “why are you here?” which was followed by a series of abrupt and rather short questions, often interrupting Hazel’s responses. He gave no impression of having read the referral letter nor looked at the Hazel’s medical history which was sitting in a file on his lap. During the questioning he was constantly fiddling with his pen, staring off into the distance, and his body language was such that he seemed to be paying us no attention at all.

It all came to a head when he asked Hazel what she did for a living. Hazel explained that she was a librarian, but that she hadn’t been a work for over 18 months, this seemed to surprise him, (confirming my suspicions that he had not read her medical history), and he then began to ask why. This was difficult for Hazel to explain, as by this point she was visibly upset by his manner and questioning, (a fact that he had missed up to this point), and whilst she was giving her answer her voice broke slightly. He then noticed how upset and fragile she was. By this point I had had enough of his apparent ignorance and spoke up, to try and explain to him why we were with him, and point out some of Hazel’s blood tests and symptoms that could be related to something gastroenterological. He responded to by question quite politely and he seemed to completely change.

He then turned into a very polite and caring doctor. All the questions were explained fully, and Hazel’s responses were verbally and physically acknowledged and affirmed in some way. He affirmed that there was a need for us to be there and then went on to explain the next steps.

He said that Hazel’s symptoms sound a lot like Irritable Bowel Syndrome, (IBS) but that he wanted to do a series of tests to rule out Crohn’s disease. These would involve blood and others tests along with an endoscopy. The referral for this will take about 6 - 8 weeks to come through. He explained that the tests he will be doing will either indicate Crohn’s or something else they can treat, or it will be clear which will result in a diagnosis of IBS.

We then left him, with him holding the door open for us, patting us on the back and saying lots of reassuring things which gave the impression he cared and was taking ownership of the problems that he could.

It was an entirely weird experience, it went from a point where I was fuming and wanting to write complaints about him, to the both of us leaving there feeling reasonably happy to see him. The end result was somewhat unusual as well. As he indicated that whatever comes from the tests Hazel will receive a diagnosis. One that may only explain her bowel problems, but a diagnosis nonetheless. For us as a couple that is a rare occurrence, so a small victory.

This means that we are again waiting for appointment dates, one for Hazel’s endoscopy, and one for the immunologist. Hazel’s next appointment is with the psychiatrist to see if she needs any help coping with her illness. This is on 20th July but I will post more on that one nearer the time.

Tomorrow is Hazel’s appointment with the gastroenterologist, Doc Gut. We have been referred to him to check out a few digestives irregularities Hazel has that may well be linked or the root to her other problems.

Needless to say it is not an appointment that either of us are looking forward to. It is a subject that most people are not comfortable talking about let alone possibly being examined. Added to this is the increasing level of mental fragility that Hazel has shown recently which means it is going to be a very hard day for her.

Please keep her in your thoughts and prayers tomorrow. I will post again with the outcomes of the appointment.

Thank you all for your prayers and wishes. It’s been a few days now since Hazel’s appointment with the neurologist; it’s taken a day or so but I think I have finally got things straight in my head.

All the tests she had have come back normal, the EEG showed signs of change but “nothing to worry about,” the MRI was normal, as was the chest X-ray, and all the new blood tests came back normal as well. She still has an elevated CRP count, and a suggested raised ESR count which indicates an inflammatory reaction taking place somewhere, and a new level, a slightly raised Rheumatoid factor.

All this adds up to the fact that all the main conditions that they were checking for have been ruled out. These are things like MS, a vasculatory brain disorder or something cancerous. This is good news.

We have been given a provisional diagnosis of Chronic Fatigue Syndrome. The diagnosis is only provisional as Chronic Fatigue Syndrome is a condition which is “diagnosed by elimination,” that is it can only be diagnosed is everything else is ruled out and any abnormal test results are explained. At the moment the doctors haven’t been able to explain her abnormal blood tests, and there is still a chance, albeit a small one, that the condition could be caused by a bowel disorder, which would still explain most of her symptoms.

So we are waiting for her appointment with a gastroenterologist on the 5th July. He will check out her bowels and either diagnose something or rule out anything their. We are aware that this may still not diagnose her, but given her symptoms and blood tests it would be ignorant and naive to leave out checking this.

The neurologist has now discharged Hazel, but has referred her onto an immunologist. He specializes in Chronic Fatigue Syndrome, and if the gastroenterologist report comes back normal then he will start treatment and investigate her abnormal blood tests more fully. The neurologist has also referred Hazel to a psychiatrist so that she can get the help she needs with her depression.

So good news on the whole. A number of serious conditions have been ruled out, and whilst we are again waiting to see doctors and referrals we do now know that one of the next two doctors will begin treating her in some way. The level and speed of her recovery will depend on which one of the doctors ends up treating her, but that is something to consider once diagnosis has been received.

Thank you again for your support, will keep you posted of any news.

This afternoon is Hazel’s return appointment with her neurologist. We are due to get a whole host of test results back.

Not sure what to hope for really, abnormal tests could mean something serious, normal tests could mean even longer to wait before treatment, and some abnormal tests may just produce a diagnosis. I guess I’m hoping for a good and useful outcome, whatever that may be.

Please keep Hazel in your prayers and thoughts today so that we do get that good outcome.

I will tray and post this evening with the results.

I went back to the osteopath this week and unfortunately its taking longer for my muscles to heal than normal. He thinks that this is due to the steroids I am on making my muscles softer so they aren’t staying in place. He hopes that within a week or two I will be back to normal.

Hazel hasn’t been good for a while now. She has been steadily getting worse over the last few weeks; she is even more fatigued, with more joint pain and temperatures, worsening asthma, rashes and an even worse state of mental stability. Our GP is worried that she has developed an underlying infection that may be making things worse, so he has put her on an old antibiotic, tetracycline, one that should hopefully treat most things. His worry, and a valid one at that, is that if she continues to worsen she may not be able to make it to her next neurologist appointment, which is next week.

So hopefully things will start to pick up a bit for both of us over the weekend. Fingers crossed!