As I take pen to paper, I can say, hand on heart, I have no idea how long this post will be. As many of you are are more than aware I can ramble a bit . Accordingly, can I warmly suggest you have a cup of tea or coffee, or whatever your choice of drink may be, ready to imbibe. Well it is a cafe isn't it . If it's a bit later in the evening I suppose it could be a pub too
Recap
Many of you will already be aware of the back story which brings me to today. For those who haven't I'd like to bring you up to date please. Now this will involve me talking all about myself . I know, I know, as well as my incredible ability to ramble I also have an exceptionally poor sense of humour, which loiters between dryer than a dry sandy desert and only of any understanding to me .
I'm 60. I have suffered with mental health problems since I was approximately thirteen. The symptoms have deteriorated over that time. The impact they have had has been nothing short of life changing, not just for me, but those closest and around me. I'm not going to bore you with the detail. I think a basic summary will suffice.
Age 13 - symptoms of excessive daytime tiredness, rapid decline in results at school.
Age 17 - first visit to GP. Prescribed sleeping tablets.
Age 38 - saw my 6th GP for the first time. Diagnosed with clinical depression. GP agreed diagnosis was 21 years late.
Age 54 - paid to see sleep consultant privately. Diagnosed with severe obstructive sleep apnea.
Age 60 - home sleep tests confirm diagnosis for severe obstructive sleep apnea was incorrect
Age 60 - further tests at hospital carried out and new diagnosis received on 6th September 2022.
The Diagnosis
I have Willis-Ekbom disease. The condition is better known as restless leg syndrome (RLS) or dependent upon the symptoms, periodic limb movement (PLM). I'd like to explain a little about the condition please. Not least because when I was first told my limited knowledge was way short of where it should be on the subject.
This is a neurological disorder. As it "usually" interferes with sleep it is also known as a sleep disorder. However, this isn’t a condition that only appears during sleep. It’s a 24hr, 7 day a week disease. My symptoms become worse at night and interfere with my sleep. That lack of sleep ultimately lead to mental health problems. For me it’s been a journey of ever-increasing health issues and an ever decreasing quality of life.
Pregabalin
I’ve been prescribed a drug called pregabalin. For the last month I’ve been stepping up incrementally to my clinical does, which I start on Thursday. The side effects have been difficult. Muscle aches, no I’ll go so far as to say pains and headaches that put hangovers to shame. I’m not looking forward to the final increase on Thursday night. There are other side effects to such as dizziness and my right leg doesn’t always go down where it normally should.
Not Triggers – Intensifiers or Amplifiers
There are several things which intensify the symptoms. These aren’t triggers. They amplify symptoms.
- Stress
- Antidepressants
- Antihistamines
- Alcohol
Hope
I am tired of being tired. I am tired of being half awake and half asleep. I’m tired of it all. I don’t hope anymore. I’ve done all that in the past and every time the diagnosis wasn’t forthcoming, or it was wrong. I’ve parked up hope.
Prognosis
Forty percent of those diagnosed [correctly] with restless leg syndrome have other comorbid issues. I have some circadian issues. My sleep patterns are poor. My usual sleep pattern is 3am to 11am. This could be a symptom of the RLS. It could be a problem in its own right. My sleep doctor will deal with this if and when he has the RLS under management. And, even then he has warned this could be a long journey.
Coffee
Each morning, whenever dawn breaks in my world I have a cup of coffee. It’s 50% lactose free milk, with 50% almond milk and two teaspoons of caramel flavoured syrup. The caffeine helps to bring me round from the pregabalin hangover. During the day I have at least one more coffee. But not after 4pm. Who would have known the Comfort it would bring.
Early Results
If I don’t try to force a normal sleep wake cycle on myself, I seem to be getting slightly better sleep. I’m still quite flat during the day though and my energy levels are poor. I’ve still had to give ground on some days and sleep.
For Now
I am taking the rest of the year off work. I will not be returning to the “fast paced”, high stress environments I have foolishly put up with previously. I am worth more than that. I will be taking each day at a time.
Thanks for listening
AiY(D)