Basingstoke Team Parish

Alan

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I suffer from Anti-Phospholipid Syndrome and Idiopathic Chronic Pancreatitis, but this didn’t explain my symptoms. I had been investigated without diagnosis for cardiac problems, lupus, rheumatoid arthritis and hypermobility syndrome. I was labelled as hypocondriac by one of my Doctors and as suffering from Munchausen Syndrome by my own family. Eventually, my wife wrote the following description to my neurologist who finally picked up on PoTS as the diagnosis after 13 years of investigations:

Despite being a very motivated person who aims high and is very ambitious Alan has had terrible difficulty waking from sleep this has been a problem since I first knew him, but it is progressively getting worse.  This has resulted in him losing nine jobs during our seven year relationship.  As you can imagine, this has meant we have been financially unstable and we generally rely on my income as a family.  In addition, when Alan attended university he was late on a regular basis and was unable to complete his degree due to the number of lectures and seminars that he missed.  Alan has also missed a large number of important medical appointments because he has been unable to wake up.  He has also been discharged from numerous clinics.  

Alan’s sudden need to sleep and particularly his difficulty waking has also caused us difficulty as a family.  Our son who is now 3 years old has had to attend child care from nine months old despite Alan often being at home and therefore being able to care for him.  I have had to take responsibility for dropping our son off at child care each morning and collecting him in the evening to ensure he does not get dropped off late due to Alan over sleeping. This sole responsibility for collecting and dropping our son at childcare adds an extra hour to hour and a half onto my working day.  It also means that our son has to wake up early each day so he has a very long day.
 
There have also been family events and days out that have been cancelled or rescheduled due to Alan’s inability to wake effectively.  Again, this has had a negative effect on our family life.  In addition, all childcare responsibilities throughout the night and early in the morning are generally left to me which will be especially hard when our new baby is born in December as it was when our first child was born 3 years ago; a problem which we were concerned about and I believe Alan discussed with you previously.
 
Alan also finds it difficult to stay awake, especially when he is travelling. An example of this is when Alan falls asleep on the train while commuting; this has meant he has missed his stop and on many occasions he has circled back to where he boarded the train still asleep.  During car journeys he finds it very difficult to stay awake and there have been situations where I have had to take over driving due to Alan showing signs that he is falling asleep at the wheel.  Because of this Alan no longer drives and I take sole responsibility for driving. 
 
When Alan wakes up, whether in the morning or after a nap during the day, it can take up to two hours for him to wake and be actively involved in conversations and tasks.  This has meant it is very difficult for us to make plans.                                                                                                     

 

When the diagnosis was given we were actually really happy to finally have an explanation of what was going on. But on the 2nd and 3rd day after, the reality started to set in and we realised that there was no cure and that things wouldn't necessarily get better. We are beginning to accept that fact and adjust our expectations from life accordingly.
 
I am thankful that my neurologist knew about PoTS and especially thankful to my wife for explaining things so well and for putting up with all my problems.
 
As a family we have begun to learn how to live with this syndrome. How to introduce rest into our family activities. If you go too hard then it takes a day or two to rest and get back to normal, so we pace ourselves and it is begning to pay off.      

I have been accepted onto the Autonomic Clinic at UCLH, which is specially equipped for POTS patients (only 500 of us in total) and I am very interested to be learning how the disease actually works. It has wide reaching symptoms, far beyond anything I had imagined, and goes to explaining virtually all of the symptoms I have suffered with since 15 years old. How a disease this expansive went unnoticed to the medical world for so long I cannot believe!? But I think all of you will agree that after such a long time of wrong diagnoses (13 years for me) It is actually a feeling of releif to finally know the truth.

Learn your limits, help your family and friends to understand what is happening, and you will find a peace. I am getting there and I wish all of you the best of luck.


 


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