lyme disease

Living with Chronic Lyme Disease

My man is an author, a rider, a musician. He has worn the hat of a journalist, a social worker and a builder. He has an amazing brain; has fabulous hands; has a very neat, sexy arse; he also has Lyme Disease. (LD)

Lyme Disease

History of Lyme Disease

The history of LD is somewhat interesting. After the second world war, the Americans employed some of those very smart Nazi scientists. Putting them to work on an island where they began to examine ticks. Deer ticks have always carried a form of LD. The scientists “experimented” with these ticks and weaponised them. The bacteria became stronger.

Then an incident occurred – some of the deer, who had been repopulated with their ticks, swam over to the nearest bay and made a life there in a place called Lyme, Connecticut.

Soon the people in the surrounding area were becoming very ill, many bedridden or worse. It was finally discovered that the bacteria from the deer ticks were causing these extreme symptoms and so it was named Lyme Disease.

Not much is known about LD. In my opinion, this is the way the giant pharmaceutical companies like it. LD is usually misdiagnosed as ME, MS and a few other usual suspects. These misdiagnoses mean that the incorrect pills are prescribed, but worse still valuable time is lost for the Lyme sufferer.

Medication

There is only one form of medication(known about), that may kill the bacteria that causes LD – and that is a super strong antibiotic. But this must be administered when the patient first contracts the disease before it has spread through the blood and nervous systems and has become chronic. Of course, if it is never properly diagnosed then the patient carries on taking a barrage of unneeded drugs and the pharmaceutical industry gets richer.

Canabas oil can also help the LD sufferer. It appears to kill some of the bacteria. If you have MS you can get it on prescripion. But for Lyme Disease – it is illegal.

Somehow LD is now a problem in the UK. It does not seem as strong as that initial outbreak in the USA. But lots of people, including whole families are infected. Naturally, misdiagnosis skews the statistics.

Our Relaunch – Seven years Ago

When we re-connected after many years my man and I had to be just friends. I was still bringing up my family. We lived miles apart so emailed and text when we could. I think this was when he first contracted the disease.  He became ill with a dreadful flu like virus twice in quick succession. He mentioned how he did not only feel physically ill, his brain was foggy and he could hardly move. At this time he was very fit, riding 5 days a week, so appeared to recover.

Palsy

Fast forward 2 years – My life was now opening up so I could have changed it to be with him but I was suffering from learned helplessness – that’s a topic for another post 😉

We talked a lot on the phone. One morning he woke to find the right side of his face had literally dropped – known as Bells Palsy. He thought he may have had a stroke but after self-examination – the internet is a wonderful place at times – he was convinced this was not the case.

I immediately looked into it and saw there were only a couple of things it could be – the most likely being Lyme disease. Thankfully the prognoses for the palsy was good. But not so with regards to the other symptoms which now really took hold of him.

Depression

I should have left my home to go and look after him – but I didn’t – not that he was short of nurses. Let’s just say I was the best nurse. Lyme also affects mental health. He became very depressed and despondent. I had seen this happen before a few years previous after the bad flu-like symptoms. This time it was much worse.

Saying he was no good for me, for anyone and that he nothing to offer anymore, telling me I should stay in the life I had created and basically to Fuck Off out of his.

I was shocked and upset but this just fed my learned helplessness, so I sat on my arse doing nothing for a few weeks. Then I called him. Fearful that he would not speak to me but deep down knowing he was depressed. Soon after we joined forces.

The first test he had from the GP was negative. Many of the tests they use are simply not accurate enough. He went to a specialist and the test came back positive. Immediately he was  administered the antibiotics but it was too late so they did nothing at all. Fortunately for his self-esteem the palsy steadily improved.

Pain and Immunity problems

Present Time – My man has Lyme disease so I live with it too. He may seem fine but the disease causes constant joint pain, similar to severe arthritis. LD attacks your immunity so, for example,  if he is bitten by a bug the likelihood is he will have a severe reaction. Fever, and extremely bad wound healing. There are times when he has to force himself out of bed because his body just wants to sleep.

His face looks normal but the nerve damage from the palsy means part of his lip is numb and the feeling is limited in general, on one side. This nerve problem has now extended to a few of the fingers on one of his hands, deteriorating each week. If this persists it will be a tragedy as his guitar playing will suffer – which is bound to have an impact on his mental health, as playing the guitar is his greatest love.

Sometimes we have a date night planned and it is clear that he is feeling physically unable so we cancel.

At other times his brain clouds over and he is unable to concentrate.

Having a background in nutrition means I have found a few things that help him to stay as well as possible– even if in pain. It is all about trying to keep his immunity up and inflammation down.

My Accident

As already mentioned depression is a big part of LD.  Constant pain and a body that will not co-operate – not to mention knowing there is not a cure –  will make you depressed. This became a fixture in our lives and I had to get used to it. But something changed for him when I had my accident. He realised that he had to be mentally and psychologically in control even if he physically felt like shit. That was the only way we would get through those first months when I was immobile. I couldn’t look after him, he had to look after us.

Nowadays, even though my leg is healed, he has remained strong psychologically. This is a testament to his disciplined nature. He literally managed to retrain his mindset.

Shakes at Night

He shakes at night when going to sleep, or whilst asleep. This can affect my rest too. I think it is his body calming down after the day of dealing with the “little fuckers” (bacteria that has taken root) in his system.

Us

At first it seemed so unfair that this had happened when we could finally be together and enjoy each other – but he is so determined not to let it have a detrimental impact on our lives. It is only when he is experiencing an episode – it gets the better of him and he has to sleep for many hours – that I really remember he is living with Lyme disease.

I have the best sex – frequently – with this man. So that means I must be good for him – that or he is such a horny fucker nothing will stop his cock!

The situation could have been a catastrophe but we try and work around it. We have built a life which seems to work for us and together we manage the Lyme Disease.

There is so little knowledge about it that some scientists think it may be sexually transmitted, which could explain why there are whole family units who have contracted it. We don’t delve into this issue though. We are not youngsters anymore.

A fantastic chemical connection exists between us. We get off on each other. If you have it you know about it. I give my body uninhibitedly knowing it belongs to him. Dealing with sex has not always been easy, I come from a difficult background, but he understands me and how I need to have sex, I can be slightly detached about it – sex for sex sake – works for me. Luckily this works for him too.

I love giving him pleasure – I know sometimes having an orgasm is a great release for him as for that time, and for a bit after, he is pain-free.

We both are living with Lyme Disease and I am very proud of how we are coping.

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21 thoughts on “Living with Chronic Lyme Disease”

  1. Lyme is a nasty one. I’m impressed with his (and yours) ability to weather under the strain of the disease. It can be taxing, but it seems you both are hanging in there, together.

  2. In the end I think what might wipe out the human race is the pharmaceutical companies. One day they will release something like Lyme’s but far worse. I know they also do amazing and good things and have most definitely increased life span but they also dabble in dangerous things too and we might all end up paying the price for that one day.

    I am sorry to hear about your partner but your love and dedication to him and your relationship shines out of this post. I think you sound like an amazing team

    Mollyx

  3. Beautiful piece!

    There should be so much more information on Lyme Disease as so little people – even medical professionals – in countries like yours and mine don’t know what it is, don’t know what impact it can have on a person. My best friend went to Australia a couple of years ago. She had saved up for it for YEARS and was so happy that she could finally make it. She contracted Lyme’s then but it took a full year before she finally got the antibiotics she needed. By then it was too late. She has chronic rheumatic pains and is depressed and tired very quickly and also a form of asthma, all things she never suffered from before Lyme’s. Because of her illness I have read a lot about it, but there are so much even I still don’t know.

    Rebel xox

    1. Was really interested to read about your friend. Because so little is known I sometimes get the impression that some people do not think it is a “real” disease – There needs to be more in the media about it – and certainly a lot more medical research x

  4. Wonderful, informative piece – about the disease, about your relationship and about your lovely, sexy, supportive dynamic. You have a gift for tackling difficult topics head on and with balance, making them very readable. I wish I had CP’s way with words, but can I be cheeky and say ‘Ditto’? xx

  5. “Make a good job of it”… you did, May. This should be a TED Talk. The expression ‘take good care of your man’ comes to mind reading this post, in more ways than one.

  6. May, thanks you for sharing this insight into your life. It must be incredibly difficult to manage this disease, which I now know a lot more about!
    You were the first person that came up to us at Eroticon and your enthusiasm was evident. If that’s how you approach life now, your man is in safe hands! X

  7. The Great Imitator.

    In addition to being misdiagnosed as MS, symptoms of LD are also often somatic mirrors of fibromyalgia.

    As I, too, have a partner with a (different) chronic illness, I appreciate your matter-of-fact-ness about it. I think being direct and pragmatic is the healthiest way to create your “normal.” (Which will never look like anyone else’s, and THAT’S OKAY.)

    1. Yes, I too know about fibromyalgia – 2 old friends had/have it. Thanks for your comment, and naturally you have an insight into how “a day” can be, having a partner with a chronic illness – Our normal is very different to others, but as you say that is more than OK.

  8. A fantastic post, very informative, and not just about the Lyme disease. I suspect the pair of you light each others fire, so to speak, hence the continued sex (despite the obstacles)

  9. Once again May you have written about an aspect of your life which must have been difficult for you. You write in such a down to earth way which is very powerful but not self pitying. Who could not fail to be moved by your man’s plight. I believe he is one of the luckiest of men to have you caring for him. CPxx

  10. This is a wonderful testament to your relationship and your commitment to each other Living with a long term, debilitating illness either makes or breaks you as a couple I think and it has certainly made you two!

    1. Thank you Eye – I have wanted to write about it for quite a while but he was reluctant and then when I told him about Eroticon talks etc. he said: “make a good job of it” 😉 x

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