My Journey To Mindfulness: Part 1

Before I write about my experiences, I would like to give the definition of the mind and of mindfulness:

  • The Mind: Oxford Living Dictionaries define the mind as ‘The element of a person that enables them to be aware of the world and their experiences, to think and feel; the faculty of consciousness and thought.’
  • Mindfulness: Psychology Today State ‘Mindfulness is a state of active, open attention on the present. When you’re mindful, you carefully observe your thoughts and feelings without judging them good or bad. Instead of letting your life pass you by, mindfulness means living in the moment and awakening your current experience, rather than dwelling on the past, or anticipating the future.’

I believe our minds are very powerful. If we’re not aware of our thoughts, they can run away with us, moving our attention past or to the future, away from the present. I have to pull myself up on this frequently, but that’s all part of the journey. I am aware when my attention has moved away from the present and I am able to adjust.

My first experiences of realising how strong our minds can be was during my work as a nursing auxillary. I was around 20 years old. The first situation was with a patient who had been admitted with a stroke. She was unconscious, with CT results showing a huge amount of brain infarction (death of cells). Medical staff informed her family that she probably wouldn’t recover from it.  Within 24 hours all her children, apart from one who was in Hong Kong, had visited to say goodbye. It took her son 4 days to make the journey. The night following his visit, she peacefully passed away. I was amazed that she was able to wait to die until after her son saw her.

This was the first realisation I had of how, in some circumstances, there’s a possibility we are able to make the transition of death consciously. That’s an incredible realisation. We may have the power to choose when we die. This means death may not just be something physical which happens to us when our body stops functioning. It means there’s a likelihood we consciously take part in the transition.

My second experience whilst working on the same medical ward was during a hectic shift. We’d had a cardiac arrest first thing in the morning. That lady didn’t make it. Inevitably, we were running behind. In those days we made sure all patients were washed before lunch time. At the point I was gathering the other nurse who was going on break with me, a buzzer rang in one of the side rooms. It was a 92(ish) year old man, who had been admitted with one form of chronic leukemia. He asked if he could get back onto the bed. This took two members of staff as a hoist was needed to transfer him. Due to time constraints it was impossible that was able to happen at that time. I told him we could get him back on the bed first thing after our break. He replied ‘I’m dying you know’. I told him he wasn’t, as it was part of the job to remain positive and encourage the patients to be so too. He once again told me he was dying. I left him, with the belief I would help him back on the bed after the coffee break.

We returned from our fifteen minute break to find the crash trolley outside his room. He’d had a cardiac arrest and died in the chair. I can’t remember, but I think they got him back on the bed to work on him.  I felt awful. I had denied someone their dying wish.  I deeply regret that now and of course if I could change that, I would.

At the time I wasn’t aware that a person could be so conscious of their impending death. It is something I have often thought about over the years. His statement has become part of the foundation of how I treat and respect people. I believe others when they tell me how they feel. Even children. It makes me so angry when adults don’t believe children just because they are children. Especially schools/teachers not believing in illness and being poorly. However, that’s another post!

The main thought these experiences led to is that if our mind has this much power in our lives, how can we use this to our benefit?  Our minds can have a negative effect on our lives, by always bringing us down and somehow, drawing our attention to bad things that happened. We have the ability to use our mind in a positive way, to not let it control us by taking our attention away from the present in a negative way.

 

Is Endometrial Ablation The Appropriate Treatment For Pelvic Pain?

I recently had a follow-up at the gynae clinic, with the consultant. She asked me ‘how was the bleeding?’

It’s about the same. It varies. My cycle varies from 21-30 days. I generally bleed for 7 days: spotting for the first day, 2-3 heavy days followed by days of spotting.

The doctors I have seen focus on two things. The amount of bleeding and the pain associated with the bleeding.

I was offered endometrial ablation and a hysteroscopy. These were offered because:

  • I’m anaemic
  • At the time of the initial appointment I was unable to take anti-inflammatories
  • Due to migraines and fibromyalgia it is not a good idea (in my opinion) to have the mirena coil fitted.

I was shocked when she told me ablation is where they burn the lining of the uterus. It stops as many prostaglandins being produced which is what causes the pain.

I was fuming when I arrived home. How on earth can they justify burning a functioning part of the body? That’s torture! Even if your body is under anaesthetic, which mine would be. I was also confused why they want to treat  set of symptoms with destroying healthy tissue.

https://www.nhs.uk/conditions/heavy-periods/treatment/

The Bigger Picture:

My pelvic pain symptoms aren’t just connected with heavy bleeding and pain. My pain includes:

  • Tethering pain:  On ultrasound it was discovered that my left ovary is tethered to my bowel. I am aware of this pain and it’s connection to movement and position. Since evidence of this I am aware of tethering pain in other locations (pouch of douglas and right ovary). Ablation isn’t going to stop tethered organs pulling and stretching.
  • Painful bowel movements: I experience this due to stretching of the bowel, which pulls on the tethered ovary. I don’t see how ablation will help pain from mechanical issues connected to bodily functions.
  • Painful urination: I suspect I have interstitial cystitis. A few days before my period my bladder can be extremely painful when it’s full and when it’s emptied. Again, how can endometrial ablation help with a painful bladder?
  • Location of my period pain: I experience period pain around my ovaries. I no longer experience excruciating uterine cramps( but I did for between two and three decades) – only excruciating ovary pain. Once again, how does endometrial ablation stop the pulling, twisting and gripping pain I feel with both ovaries during a period???

No More Periods! 

Whilst some may see this as a relief from the inconvenient, annoying monthly menstruation, I see it as an intrusion of my body’s natural cycle- both monthly and long-term. Even though I have many problems with this, it doesn’t mean I want the cycle to stop. My body is doing what it’s supposed to!

I do not understand how you can burn away the lining of the uterus to then have no periods (I think some people can still have them/ and that they can return). What about the hormonal cycle you still experience. You’re still meant to have periods- as dictated by your hormonal cycle.

To me, I see that as creating a gap from that which your hormones are managing to the inability to allow those changes to happen as you’ve had part of your body destroyed. It doesn’t make sense! Is a hormonal imbalance created as your body can’t do what the hormones are trying to make happen?

Your Right To Experience Menopause Is Taken Away From You

Menopause is something I want to experience. I think it’s a privelidge to have reached this part of my life. Not everyone is lucky enough to make it to the grand age of 45, which I have reached.

I Don’t Want More Surgeries To Treat The Effects Of Previous Ones

I feel if I start having surgery for pelvic pain it will eventually lead to additonal problems in the future, which will require more surgery. I read a study carried out in the US where 25% of women who had endometrial ablation needed hysterectomies in 5 years. That’s a big percentage. I want to avoid surgery as I feel it will create more thethering, which will lead to needing more surgery. It may end up being a viscious cycle.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3866051/

You May Have Five More Years Of This

To back up her suggestion of the ablation the consultant informed that I may have five more years of periods to deal with. That’s actually very positive. In only five years I may have reached menopause. That’s nothing compared to the thirty three years of pain and not quite as many years of heavy bleeding. I am so close to the end. I don’t want to cheat. I want to reach that goal myself, knowing I made the correct choices for the long term health and well being of my body, mind and spirit!

Ways To Cope With The Heat

If you deal with any chronic medical condition which causes fatigue and chronic pain you are probably challenged, as I am, with coping in the hot weather. It drains my energy, gives me nausea and like everyone else makes me irritable and grumpy!

Here are some ways of dealing with the heat.

  1. Stay out of the sun.  I have to stay indoors. I’m okay to hang the washing out if it’s early enough for the heat not to be too intense. Other than that I avoid the sun completely. It flares up the iritis pain in my left eye. I am also photophobic when it’s very bright.
  2. Pull back from your usual activity.  Don’t do any house-work. If you’re used to fatigue, your house may, like mine, not always be looking like a show home. I have decided that chores can wait, my health is more important than a pristine home.
  3. Drink plenty.  This needs to be a priority, especially if like me, you are on diuretics or Spironolactone. Once you’ve finished one drink, make another one. Have one near you at all times.
  4. Use a cool flannel/cloth to cool your skin.  This is a great way to stay refreshed and keep cool.
  5. Close the curtains which are facing the sun.  Adopt the ways of those who live in the heat. No sun shining into rooms will stop it becoming as hot.
  6. Open your back door and front door. I know not everyone is lucky to have a back and front door. This is helpful, especially in the evening to circulate the cooler air outside into the house. My Dad did this a lot in the summer and I always do this too. I’m surprised I don’t see more front doors open to cool houses down.
  7. Buy a kiddie pool, or go to a pool. Some people have swimming pools at their house already, but if you don’t, a great alternative is to buy a kiddie pool. You can buy small ones and bigger ones. We have a very small one from ASDA, which is perfect for babies and dogs or just soaking your feet in. But you can buy bigger ones good for the whole family.
  8. Cold food. Popsicles/Ice lollies are perfect. You could also have fresh fruits, vegetables and any sort of cool food. The saying ‘cool as a cucumber’ is a saying for a reason! Cucumber helps cool you down a lot!

Incorrect Information In Medical Letters: Is This A Cause For Concern?

We put a huge amount of trust in the doctors who manage our medical conditions. With serious side effects from all medications, we literally are putting our lives in their hands. They have very large salaries due to the level of their responsibility.

The first time this happened was the discharge letter following my daughters hospital admission about eight years ago, when she was diagnosed with asthma. Due to my medical conditions I was unable to stay with her at the hospital. Chris stayed with her. I had left by the time the consultant saw her and took down a history. In the discharge letter he stated that Chris and I smoke! We don’t. We used to smoke socially, but I wouldn’t even say I smoked then, as it was about two cigarettes a week. Anyway, I was shocked that someone so high up in the medical team could get something so basic, so wrong.

In April this year I saw a Locum Registrar in a Gynae clinic. He carried out a routine examination before removing a cervical polyp. The examination revealed:

  • Tenderness on the right
  • Pain (a lot) on the left.

When I received the letter regarding that appointment it said I had pain on the right. It mentioned nothing about the pain on the left- where the ovary is attached to the bowel, at all! I was quite angry that something so important had been communicated so wrong. It makes me lose trust of those in the medical profession who do this. How can I trust them to give me the correct treatment if they can’t remember what pain I have and where. Thankfully this has never happened with any Rheumatology or Cardiology appointments and those consultants have my full trust and respect, as does my GP.

I would love to hear your experience of this. Leave a comment if you would like to share your experience, but please leave out any names of doctors or hospitals.

Starting Celebrex

Even though my Rheumatologist said this was safe to take with Hyperaldosteronism, I still had some doubts. I was quite poorly before taking Spironolactone ~ as soon as I had one dose my fatigue symptoms lifted. My face felt lighter, it was so much easier to speak! Also, somehow the connection between my brain and legs reconnected. I was quite anxious about these symptoms returning. I didn’t want to have to use the wheelchair out of the house again.

Not long after the first dose I became short of breath. I couldn’t speak in full sentences. I also had tightness in my chest. This was very disappointing and I wondered if I should go to A&E, as this wasn’t supposed to happen. However, I didn’t want to give up on the medicine as soon as I tried it. What if I was giving up on the chance to experience days with less pain? I didn’t have severe chest pain, so I stayed at home. Next my head began to feel weird, I eventually realised it was part vertigo and part light-headedness. I took my blood pressure. It usually runs around 135/85 on 25mg Spironolactone. It was 118/77. I decided to sit down and relax instead of trying to carry on with all that I had planned to do.

Through the rest of the day I continued to keep an eye on my blood pressure. It stayed low, the lowest being around 112/68. Having worked on medical wards in hospitals in the past I knew that wasn’t a concern, even though it was low for me. When I’d been pregnant with Ben, and on a surgical ward placement for nurse training, I almost fainted after standing for too long. My blood pressure then was 90/60.

The other annoying side effect is severe leg cramps in the night. These are ones which are very difficult to stop by stretching the muscle when you know it’s about to go into a cramp. They can also last for ten minutes, which is much longer than the ones I experienced before the hyperaldosteronism was treated.

I have also experienced not passing as much urine and difficulty passing urine. I experienced this with diclofenac and naproxen, it was the reason I had to stop taking them. As it is summer I have increased my fluid intake and am keeping an eye on this, as if it continues, or get’s worse, I will have to stop taking them.

On the good side. After a few days I began to notice a massive difference in my pain:

  • Minimal morning stiffness
  • Improved plantar pain (returning before another dose was due)
  • Eye pain stopped
  • Joint pain almost stopped
  • Back pain almost stopped
  • Massive improvement in fatigue
  • Massive improvement in short-term memory

The improvement in all my symptoms has had a very positive effect on my life. I can do physical activities for so much longer. The garden is finally being sorted (for some reason no one else has any interest in gardening) My blood pressure continues to run a little lower than before. It increases as the day goes on.

Rheumatology Appointment

My Rheumatology appointment was a couple of weeks ago. As I hadn’t been seen in the clinic for about four years, I had a thirty minute appointment.

After examination I was told ‘It isn’t straightforward.’ He explained I have all the signs for Fibromyalgia. The complication is that

  • I am positive to HLA B27
  • My brother and Mum have Ankylosing Spondylitis
  • Some of my symptoms suggest inflammation of my spine
  • I have other Ankylosing Spondylitis symptoms: plantar heel pain on right foot, acheles tendon pain on left foot, iritis type pain with photophobia in left eye, IBS symptoms, low back pain and morning stiffness.

To rule this out a repeat blood test was taken for inflammatory markers. This was negative, so I don’t need another MRI of my spine/pelvis.

 

Plan:

  • Commence Celebrex 100mg twice a day.
  • Come off Amitriptyline and commence Pregabalin
  • Follow up in 6 months.

It was a positive appointment. I am pleased I can take anti-inflammatories again. Celebrex is apparently not so bad with digestive side effects. It’s also not a problem with Hyperaldosteronism. Hopefully I will be able to take less codeine for endo pain too.

 

What Is Wrong With Me?

So my swollen, painful knee isn’t osteoarthritis.

I saw my GP in February as my knee was still painful and swollen. Along with painful, stiff elbows, fingers and a painful left eye. I’d had all of these symptoms since around Christmas time. Whilst it is normal for me to have a flare up after Christmas, it isn’t normal for me to have pain in those joints, or for the fatigue to last longer than 6 weeks after New Year.

My Mum and my brother have Ankylosing Spondylitis. I have all the symptoms. I am positive to HLA-B27. I was even diagnosed with it at one point. But that was revoked by another Rheumatologist to the one who gave me the diagnosis. My ESR is usually not raised and I have no radiological evidence of AS.

As my Mum also has Rheumatoid arthritis in her wrists and Hypothyroidism I was tested for those, along with the usual ESR and blood count.

I went to the next G.P appointment armed with a four page list of my past and present symptoms (typed on A4 paper), since my back injury.

I had done some research online for auto-immune diseases. Lupus stood out. I have a lot of the symptoms. Plus all of my flare ups over the years included symptoms which may have been Lupus. My G.P was happy to test me for the antibodies for Lupus. I will get the results next Tuesday.  If they are negative it may possibly be Sjorgren’s Syndrome or Behcett’s Disease. But one step at a time.

I experience the rash associated with Lupus.

rash on cheeks

The skin on my arm also has a rash.

This rash has been on my arm for 5 months

I will patiently wait for the blood test results on Tuesday.

Losing My Job and Career Due To Chronic Illness: Dealing With Grief

How Grieving For The Loss Of My Career Started A New Career In Writing.

The time after my spine injury was very challenging. It took over 6 weeks to initially return to my job as a Health Care Assistant on a busy Medical Ward. However, I had lied at the Occupational Health Appointment. I told the doctor that my back and pain were much better than they actually were. I just wanted to get back to work and normality.

Within a week of returning (which was in early December) I came down with the Noro Virus, which was doing the rounds on the wards. During the following Spring I had tonsillitis, needing more time off. Then lastly, the final straw in my nursing career was my appointment with the Occupational Health Doctor at Exeter hospital to start Nurse Training. My goal was to become a Macmillan Nurse. My Dad’s Mum died of cancer when I was seven. I had an idealistic view that no one should be in pain! I wanted to have more input into helping people transition with cancer. Ironically, 16 years after my spine injury with numerous chronic conditions, I realise how living a pain-free life is unrealistic. Part of the physical assessment at the appointment was checking my back to see if there was any nerve root involvement. One of the nurses I worked with told me to put up with the pain this would cause, as it would be worth it to get onto the course. Of course I did this, it had been an ambition since I was five to become a nurse. Anyway, as I lay on the couch, she lifted each leg up as high as it could go to see if it hurt. It did, but I allowed her to keep lifting my leg. My sights were firmly on the long-term plan, not the short-term pain (which is what I thought it would be).

Chris and Ben had come down with me for the appointment. We stopped on the way home for a picnic in a forest and to stretch our legs. This is when the pain started. My back became more stiff. Within the following week I had horrendous nerve pain going down my right leg. It was very intense, requiring to stop what I was doing until the pain passed. One of the G.P’s from the surgery I attended at the time referred me to the orthopaedics.

Life changed a lot from then, as I was never well enough to return to my nursing job. By the November I had an appointment with my Nursing Sister and a Personnel Officer. I ended my contract by mutual consent. It was heart breaking. I am in tears now as I write this. My dream to be a Macmillan Nurse burst as quickly as a pin popping a balloon.

I absolutely loved my job with all my heart. I was always the first one out of the office in the morning to get to the patients and start taking observations. I enjoyed helping people recover from an illness, or just being there with someone through their final moments. That was who I was, that was what I based my identity on, as well as being a wife and a mother. I was offered work elsewhere in the hospital, but each and every day I would have had to go through the same heart-break of not being able to do hands on care. I would not have been able to go through that. As it was, I would be in tears after every appointment I had at the hospital, for a long time afterwards.

Eventually I began writing poetry. This was a great way to process what I was going through. I would generally write when I was frustrated with a situation, or angry/annoyed over something someone said. I don’t really argue with people. I don’t become defensive or say things back in a counterargument. I keep quiet and slowly process what was said and how I felt. I firmly believe that we can’t change anyone. The only thing we have the power to do is change how we feel about a person, a situation or ourselves.

I feel the journey with the poetry allowed me to process my grief for the loss of my career. I slowly changed from being a negative person to always being able to see a positive in any challenge or situation.

New YouTube Monetisation Policy And It’s Affect On Chronically Ill Creators

 

Today YouTube have once again changed their monetization policy, for the second time in a year. This morning myself, along with thousands of other small channel creators received an email informing us that our Partner status will be terminated by February 20th if our channels fail to reach 4,000 hours view time, or 1,000 subscribers.

I have three channels. A kids channel, a family vlog channel and another small channel. I am lucky as the kids channel has been going for nearly three years. It has almost 10,000 subscribers and nearly 10 million views. I can transfer a lot of the family vlog videos to the kids channel. The family vlog channel was initially monetized, then late last year that was taken away, to be reviewed when the channel reached over 10,000 views. It reached 10,000 views over Christmas, but monetization was never re-instated.

I began YouTube as a job due to my medical conditions and their effect on my health. Being self-employed it is possible to juggle pain and fatigue alongside childcare and household tasks to what is suitable on any given day. I believed YouTube was a wonderful platform for people challenged with health issues. I was proud to be a part of something which allowed so much creativity and supported so many people living in adversity due to their health. I felt supported, safe and secure in my employment, knowing this wouldn’t be a challenge to any of my health issues. (Stress is frequently a trigger to exacerbation in my health conditions. Leading to pain and fatigue and a more limited ability to carry out activities).

I am now questioning my safety on the YouTube platform. First there was the ‘Adpocalypse’ crisis last year, when decreased revenue was experienced by every YouTuber. Now, not even a year later, we are faced with YouTube pulling the rug out from all small creators who don’t meet their requirements for monetization. During such a time of government austerity this will hit some small creators hard.  Many disabled people have had their benefits taken away from them in the UK, due to cuts. Now the ones who run small channels will have their YouTube income taken away from them too. I expect ‘Rubbing salt into the wound,’ is a massive understatement for some creators.

The Inevitable Post Christmas Endometriosis Flare Up

My attempts at minimising a flare up over/following the holiday season have drastically failed. Yesterday I had the worse pain from Endometriosis I have ever experienced.

The pain was new, in my lower left pelvic region, quite close to my groin. It was extremely painful to put weight through either leg to walk. I had to take very small steps and hold onto something to ensure I wasn’t putting all my weight through my pelvis. The pain was sharp and crampy. I was unable to speak in sentences. I wondered if it was maybe hip pain as it was so close to my groin. Due to the crampy pain occurring in waves, I guessed it probably was due to endo. I also had the ‘tethering’ pain (adhesions haven’t been surgically diagnosed) in what I believe to be the Pouch of Douglas and on my right side. I initially took 30mg of co-codamol which had no effect. An hour later I took another 30mg of co-codamol. This took the edge off, I still had a lot of pain. I could not sit down straight, even with the amount of pain relief I took. I had to sit sideways and frequently turn as it was very painful on my swollen knee to sit in this way.

I still have the pain today, although it isn’t as severe. I hadn’t taken any pain medicine the day before yesterday until the evening. I guess I should have taken something sooner to keep on top of it.  Today it is painful to pass urine, painful to pass gas and there is absolutely no way I could have a bowel movement. Last night I had some urinary retention. But the pain isn’t as bad today as yesterday. On walking I experience a pulling pain across my lower abdomen.

One Week Later: The pain has persisted beyond the end of my period, as it did with the flare up in the autumn, when we were in alternative accommodation due to the kitchen floor being fixed. I think the holiday season is the cause for this flare up. I tried so hard to pace. My daughter and I went out on most days in the last ten days before Christmas. I felt this approach was better than trying to get a lot of things done on just a few days. Both ways of dealing with the to do list have pros and cons. Due to the finances we had to wait until a couple of days before Christmas to get the last few bits organised.

The most stressful thing however was from lack of understanding and confusing conversations with/from a family member.  Due to my daughters fatigue and symptoms with Ehlers Danlos Syndrome, last year we popped in for a coffee on Christmas morning.  My husband had been told not to bother with this as it wasn’t worth it (?). We actually wanted our daughter to see her Grandma on Christmas Day. In September, during the time of immense stress with not being at home, the family member approached my husband whilst he was at work (in a local hospital) She then proceeded to tell my husband his failings, how we ruined her Christmas Day last year… AND don’t bother coming over for Christmas Day this year as your dear wife takes four days to recover!  Everything that was said, how it was said and where it was said, along with the fact that there was no way to get a word in edgeways was the last straw for my husband. He didn’t argue back. He equally could have said some truths in return. However, even if he wasn’t at work he would not have done this.  He chose not to contact this person after this and left it at that. Later that night there was a phone call from the family member with an apology (of how it was inappropriate to have the conversation at my husband’s work). So we carried on with our life. We managed to meet up a few times. We were told not to bother coming out for a birthday as it was too far. We did anyway. Then the week before Christmas there was a phone conversation with another rant on my husbands failings. This all completely back-tracked from the apology. The confusing part is that after telling us not to go over for Christmas, the person complained that we weren’t going. My ‘four days to recover’ was mentioned once more.

i Wish It Only Took 4 Days To Recover From Christmas… in reality it takes six weeks. This information was taken during a phone call when I was bombarded with many questions about my M.E symptoms. Never did I realise they would be used against me.  But Christmas and school holidays were never asked about, so it was assumed everything takes four days to recover from. But, that was before I was diagnosed with Hyperaldosteronism (which improved my fatigue) and before a couple of endo flare ups (which have worsened the fatigue). I also have my birthday on the 5th January, then Ben’s birthday in the third week. So I have to keep going and organise what is needed for these too.

I am aware that some people need to be educated when it comes to understanding pain and fatigue symptoms in other people. I dislike the fact that a lot of the time what is said doesn’t register with the other person. This is a challenge to move on from as I don’t feel I should justify everything to others. I have a feeling of contempt towards me from certain people with regards to my children’s and my health. I try to rise above it. I could easily move on and not look back ever due to the disrespect I have dealt with. It takes me a long time to process this behaviour and attitude towards myself and my children. It may take weeks or months. I want to move on in the best way for myself and my children whilst treating the people concerned with respect. My main priority has to be to remain as stress free as possible, as this makes my endo pain a lot worse.