Sleep and Chronic Pain – Is That Even Possible?

I can cope with most things about my disability. I’m not saying it’s easy. It’s far from easy but I have a toolkit of chronic disease management strategies, I’ve written about in the past, that help me on a daily basis……(Musings and Plans and Body Behaving Badly)

My pain is unrelenting during the day but I can find things to keep my mind occupied, to distract me as much as possible.

Those Early Hours Of The Morning Are Just Plain Hard

When pain overtakes my body in the early hours of the morning it’s just plain hard. I simply can’t sugarcoat night time pain with positive throw away lines.

Tossing and turning makes my legs hurt even more than usual and I’m acutely aware I’m disturbing my husband. That’s the last thing I want to do. He needs his sleep. He does so much for me during the day that I feel it’s unfair to disturb him at night.

Sure, he could sleep in the guest room but that’s just not us. Many couples do that and it makes perfect sense. Some couples literally don’t have a choice as different types of diseases make sharing a bed impossible. That’s really tough.

In our situation, for as long as we can, my husband and I are committed to staying side by side to fight this chronic illness battle.  For now that includes still sleeping in the same bed.

The only time we’ve slept apart is if one of us has been in hospital or when I was working and was away at a conference.

That’s across nearly 23 years of marriage.

Navigating the Night Time Pain

On bad nights I usually wake at 2am. So, I make my way downstairs. Sounds easy but I have to navigate down the long hall to the staircase using my crutches. I then use the remote to get the stairlift to come up the stairs from its parking bay downstairs. I carefully climb on it and then once at the bottom, struggle to the kitchen to make a much needed cuppa.

I carefully carry the cup of tea in one hand, using only one crutch in my other hand, to move to my lounge chair. I really need two crutches so it’s a delicate operation.

Finally I take an extra pain killer.

The thought of this process often makes me just lie in bed in pain on bad nights, rather than going to all this effort but other nights the pain wins. I have to break the cycle and get up and move.

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It’s Not My Fault, It’s Not Your Fault

As I feel the extra pain killer starting to work and the warm drink bringing a feeling of comfort, I begin to relax.

I know I am going to be a cot case tomorrow. Actually a bad night like this has consequences that carry over a number of days. A harsh reality of living with a chronic disease.

I always want to find a reason for having a rough night. My mind searches for answers.

I must have done too much.

I haven’t rested enough.

A whole list runs through my head finding reasons to blame myself for my soaring pain levels.

In the stillness of my lounge room with the clock ticking for company and otherwise silence surrounding me, I eventually settle my thoughts.

I remind myself that I haven’t done anything to cause this disease to attack my body. I have spent my days balancing rest and activity.

I am managing this the best way I can. This is not my fault!

Sleepless nights and unrelenting pain are not the fault of the chronic illness sufferer. We have to try and live each day the best we can. We have to move our bodies. We even have to stretch our limits from time to time to achieve an important goal.

It’s not our fault. It’s our disease causing the pain and the sleepless nights.

What we need are strategies to deal with yet another part of living with chronic disease

Sleepless Nights Strategies

There are some really great “Good Sleep” resources online. This one is from the Macquarie Universities Chronic Conditions Course and it’s my favourite: Good Sleep Guide

Sleepless nights will happen from time to time. Accepting that, not fighting it, helps me relax and find a place of peace. That helps sleep to eventually return.

Some of my other tips for those disturbed nights (remembering that they are not your fault) include:

  • Get up when pain is overwhelming. Breaking the tossing and turning cycle really helps;
  • Make a hot drink and if you can, take some break through pain medication (speak to your Dr about this);
  • Don’t put a time limit on when you should return to bed. Listen to your body. When you start to feel relaxed and your eyes want to close, it’s time to try again.
  • If you go back to bed and you still can’t sleep, just enjoy resting there if your pain is manageable. If your pain is too distracting, get up again and relax in your favourite chair. You might nod off there and that’s fine so long as you are in a position that supports your body correctly.
  • When my pain is really bad at night I have to distract myself, so I’ll pick up my phone and write a blog post. Or I’ll reach out to someone on my Facebook forum.
  • Online support groups are excellent in the middle of the night if you need to debrief with someone who really understands. My forum Medical Musings with Friends , is an international group so there is always someone around to chat with.
  • The next day try and maintain your normal routine.
  • Make sure you stick to your daily rest schedule but don’t try and catchup on sleep. In my experience I usually sleep like a baby the following night due to exhaustion. It also always seems to be a restorative sleep.

So Is Sleep and Chronic Pain/Illness Possible?

Yes, I think so but there will be nights, even seasons of nights, when sleep will be disturbed. Try not to stress when the sleepless night arrives.

With some solid strategies, a settled mind and peaceful heart (helped along with meds and a hot drink) sleep will eventuate. Pain will begin to subside enough to allow that place of slumber to return.

On those occasions when it doesn’t…..we might just find ourselves chatting online.

Sleep well

Sam xx

If you’re looking for genuine support, care, understanding & friendship, you are so welcome to join my closed Facebook support forum, Medical Musings with Friends . It’s a safe place to connect with others living with chronic & complex diseases, who truly understand the daily challenges. A warm welcome awaits.

I’m also a Contributor at “The Mighty”. You can check out my published articles at My Author Page

I also write @ Blogs by Christian Women

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A Hospital Stay To Remember

For 8 days in November 2017 I lay in a hospital bed basically writhing in pain.

Rewind to the beginning of that 8 day period and I was being rushed to hospital in an ambulance as my left leg, the one with the non union femur fracture, was like a wooden block and it would not lift off the ground. It wasn’t numb, it was excruciatingly painful.

A quick phone call to my Orthopaedic Surgeon and my 8 day hospital journey began.

After a few hours in ER I was admitted to a ward. My hospital is a Private Hospital and I always get a private room. They were undergoing major renovations this visit, so some rooms were closed off. Generally there are only 2 or 3 shared rooms per ward. I was desperate to get to my room so I could deal with my stoma in private and finally get some peace and quiet after the craziness of the ER.

A lovely nurse popped her head into my ER bay where my husband and I were waiting. Actually it was a bed in a stationery cupboard due to lack of space and that auspicious start really defined how this entire hospital stay was going to play out.

So back to the nurse. She very sheepishly said, ” I’m so sorry Sam, we have no private rooms tonight, we have to put you in a shared ward”. My heart sank but I told myself, as positively as I could, that I’d survive and it was only for one night. They had promised me a private room the next day, how bad could it be?

Not Quite The Room With A View

We arrived at the ward only to find it was filled with high care geriatric patients. They were at risk of wandering and needed a nurse in the room 24/7. I took some comfort from the fact that at least a nurse was there. The logistics of a shared bathroom in this environment, when I was on two crutches and needed access to my stoma supplies, was a little too much to bear I must admit. I felt like wandering too at high speed out of there!!

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I was in so much pain that the first night was a bit of a blur. The next morning I had a team of Specialists all working on my case. My Orthopaedic Surgeon, my Endocrinologist, my Colorectal Surgeon, my Pain Management Specialist, my Clinical Immunologist and a Rheumatologist was brought in for good measure.

Each one wanted to poke and prod me, take blood, test out my leg movement and the worst part of all was that each one wanted a different kind of CT Scan, xray, ultrasound and MRI.

Finally Some Good News…But Not For Long!

Thankfully the following morning the nurses gave me some good news. I was top priority for a private room given the complexity of my health. I was so relieved and by mid afternoon my husband was settling me into my new “tenporary” home. We thought now at least I would feel settled for the rest of my stay.

Hmm…we were wrong. Three days later a nurse popped into my room with a slightly nervous smile on her face. “Sam, I’m really sorry but due to renovations this entire ward is closing down tomorrow and we have to relocate everyone by 10am Monday to a different ward, on the other side of the hospital”.

My heart sank again. I was exhausted. I had not slept since arriving in hospital.  I’d been transported backwards and forwards to the xray department numerous times. Each transportation increased the pain due to the impact on my bones. I was also told that the relocation was only for one night and we would have to move back the next day. Oh my goodness!!

I was so numb from the news I forgot to ask if I would still get a private room in the new ward. I didn’t have any energy left to care really. Drugs and tests and examinations were all taking their toll. I had come to the end of my resources.

Thankfully the move to the new ward went smoothly and I was one of the first patients transferred with a personal Nurse. I was so relieved to be wheeled into a large private room with a big picture window, looking onto a couryard filled with greenery. It was tucked down a little corridor and so peaceful. I had left this entire relocation in God’s hands and I had been so looked after.

Chaos Prevails

There were a few issues which kept the chaotic theme running. The bathroom had a power point hanging off the wall and the TV would turn on but wouldn’t turn off.  The air conditioning vent had a plastic bag hanging off it to stem the cold breeze. It was an old ward!

A lovely maintenance man was called and he couldn’t do enough for me. Within 10 minutes he had everything fixed and I could finally breathe a sigh of relief and relax a little. At the back of my mind though was the thought of having to do the move all over again the next day.

I ended up with 6 scans/x-rays etc in total and each one caused severe pain to shoot through my bones.

Medication Madness

On top of that the Pain Management Specialist, who was so keen to reduce my pain, started me on large amounts of Palexia and a Ketamine infusion.

This site gives an excellent overview about Ketamine Infusions

Now, I really don’t do well on strong pain killers. The only one I can tolerate is Endone and even then I have to divide it into regular 2.5mg doses every 5 hours to avoid being ill. So you can imagine what a star patient I was on 200mg Palexia and a Ketamine infusion. I was so nauseated and dizzy I couldn’t get off the bed. I went from being hyper to unable to control my tears. I felt trapped and overwhelmed which is just not me at all.

I couldn’t sleep with the Ketamine infusion as it was being infused through the right side of my abdomen. It got moved every 12 hours but because my stoma is on the left side of my abdomen we couldn’t rotate sides. That meant I couldn’t lie on my right side to sleep which I need to do to take the pressure off my broken left leg. It was just a nightmare that had no escape route!!

“You Obviously Just Don’t Do Drugs”

Finally my Pain Management Specialist agreed that I just don’t do drugs. On day 6 of my stay we stopped the Ketamine infusion which thankfully restored the normal taste in my mouth. The Ketamine had caused another very un welcome side effect. Everything tasting like salt, even water. It was disgusting!

I felt like a failure. I’d reacted badly to the medication and even worse none of it had touched my pain.

The scans revealed all kinds of things, none of which could be fixed without surgery and we all agreed I am not up to dealing with major surgery unless an emergency.

Some of the issues just can’t be fixed. My legs have muscular atrophy which has worsened since last scan. I have avascular necrosis in my hips. I have calcification in the muscles in my left leg. My broken leg remains broken. I have damage to my sacroiliac joints with stress fractures. I have disc prolapses throughout my lumbar spine threatening to compress my spinal cord and the list goes on.

My Rheumatoid Arthritis can’t be treated because my medical team believe the Disease Modifying Medication, including biologics, used to treat RA, will adversely affect my bone disease. This was the final decision by two Rheumatologists. That means I’m at high risk for joint deformity and disability but the bone disease will cause even greater damage, so we have to weigh the risks.

The bone disease causes pathological fractures throughout my body. I’m basically being attacked on every angle from a muscoskeletal perspective.

The non functioning leg and escalation of pain is all the result of my bone disease progressing. There remains no treatment and no cure.

True Care

I had some of my Specialists sit with me with tears in their eyes. I found myself comforting them and saying, “It’s ok, at least we’ve tried a few things, it’s good to know why the pain’s increased and I’ll adapt”.

I told my Pain Management Specialist that I’d been approved for a Level 4 care package (highest level of care in Australia). I thought she might say, ” Oh you won’t need that”, instead she quickly responded, “so you should”.  It’s moments like those when the reality of my situation punches me.

I did however receive a bit of a reprieve when an excited nurse, who was accompanying me back from the xray department, told me an email had just been received advising that we would all be staying in the new ward. The other ward would be closed for 3 months.

Yeah!! I could stay in my quiet peaceful room. That night with no Ketamine infusion in my abdomen and with the knowledge of no more moves or tests to endure, I finally slept.

The whole hospital stay was really a dead end. I knew it, my Specialists knew it and none of us really knew what to do about it. Well, that’s not strictly true. I knew the best place for me was home. I wanted to go home.

Can I Please Go Home Now?

Reluctantly, my Specialists agreed that home was the best place. I could rest more easily, manage my pain meds without relying on the nurses schedules, eat food that worked for me and I would continue to be monitored closely as an outpatient.

The Doctors and Nurses were amazing as always. On one really bad night a beautiful nurse brought me a much needed cup of tea at 3am. Gestures and care like this made a nightmare hospital stay just a little more bearable.

Despite my inner turmoil at what was happening to me and around me, I was constantly surprised at the amount of times Nurses came into my room to seek refuge. They said my room was serene and peaceful. That in itself was a miracle as I felt far from serene and peaceful.

All I could do in my darkest hours of pain was cling to God’s promise that “He would never leave me nor forsake me” and ask Him for strength for each day and hope for tomorrow.

“He will never leave you or forsake you. Do not be afraid; Do not be discouraged.” Deuteronomy 31 v 8

After being home for two days, my pain remained and I came down with a viral infection (a parting gift from the hospital). I was finally sleeping at night though in my own bed…pure heaven.

I came home with a clearer picture of where things are at with my bone disease and I now know that my regular pain medication of Endone is the best for me with the dose slightly increased.

At the end of the day, if at all possible, there is just no place like home 💗

Sam xx

If you’re looking for genuine support, care, understanding & friendship, a place to share your seasonal changes & challenges,  you are so welcome to join my closed Facebook support forum, Medical Musings with Friends . It’s a safe place to connect with others living with chronic & complex diseases, who truly understand the daily challenges. A warm welcome awaits.

I’m also a Contributor at “The Mighty”. You can check out my published articles at My Author Page

I also write @ Blogs by Christian Women

I’m a member of  the Chronic Illness Bloggers Network and the  Grace Girls Facebook Group

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Joy in the Morning

I have just had the night from hell. Pain has soared through every bone, muscle and joint in my body as my bone disease attacks from every angle.

I woke from a deep sleep screaming at 2am, causing my husband to jolt upright and run to my side. I couldn’t move any limb. I was rigid with a pain that I am struggling to describe.

Broken

Broken. That is the only word that comes close to it. Physically broken.

It was like lying on a bed of nails with bricks placed on top of me and someone standing over me hammering the bricks into my body.

I rarely cry, I didn’t cry last night but I groaned. The pain was too intense to cry.

My husband was again my hero. He made a cup of tea, he sat and chatted with me while we waited for extra pain killers to take the edge off. He loved me through the pain, in the midst of the pain. He was amazing 💗

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Hope

As I sipped my tea last night I was reminded of a beautiful verse from the Bible;

“Weeping may endure for a night, but joy comes in the morning” Psalm 30 v 5

As I mulled over the words of this verse I knew that I would feel joy in the morning.

Joy that the night from hell was over.

Joy that the sun was shining through my windows.

Joy that my morning meds would bring a better level of pain relief.

The thought of that joy to come and knowing that this night of pain and sheer agony would not be forever, brought a sense of calm and hope as I lay back in my bed.

Joy

I have woken to sun shining through my window. I do feel joy that the night is over.

I can feel my morning meds reducing the severity of my pain. I have laughed with my husband.

I have been encouraged by a beautiful post on my support forum, reminding me of one of my favourite hymns:

I heard the voice of Jesus say, Come unto me and rest;

Lay down, thou weary one, lay down; Thy head upon My breast”

I came to Jesus as I was, weary, and worn, and sad;

I found in Him a resting-place, and He has made me glad.

Despite the pain, in the midst of the pain, joy has come in the morning.

My hope was not in vain. It is never in vain.

Take care

Sam xx

This post was shared at the Salt and Light Linkup Group

If you’re looking for genuine support, care, understanding & friendship, you are so welcome to join my closed Facebook support forum, Medical Musings with Friends . It’s a safe place to connect with others living with chronic & complex diseases, who truly understand the daily challenges. A warm welcome awaits.

 

I’m also a Contributor at The Mighty

I also write @ Blogs by Christian Women

 

Musing while Waiting for the Morning Fog to lift!

I’m not talking about the weather, it is the most glorious day outside as I blog inside, sitting in my favourite chair. I really should make the extra effort to get off my armchair, grab my crutches, grab my ipad, grab my coffee and go outside……hmmm, can’t quite achieve that!

Every morning I always have a list of “I should do this, or I should do that” buzzing in my head. In my minds eye I run around the house with the energy of 2 or 3 people, achieving so much. Then, I get out of bed and try to stand up. Reality sets in and all those wonderful tasks that moments ago seemed so easy, suddenly are insurmountable.

I do however amaze myself everyday as to how much I do achieve. I might not be able to do everything I want to do in an hour but with careful planning and pacing it is possible to get through a realistic daily “to do” list. The list needs to be shorter than it once was but to have a sense of achievement at the end of the day is so important when living with a chronic disease.

The fog I’m talking about is the one that follows the morning medication. The pills are necessary to get my body moving at some point in the day and to dull my over active immune system just enough to prevent permanent disabling joint damage from Rheumatoid Arthritis and to manage the unrelenting pain from my rare bone disease. However, they render me almost useless for the first few hours of my morning. I feel like I need to constantly shake my head to get it working.

Are the pills worth it?

I ask that question over and over but I know that my Rheumatoid Arthritis symptoms are kept under control with them and without the pain killers for my non healing broken femur & widespread bone pain…well, I don’t know what I would do.

My husband is out for a while this morning, only for a couple of hours but I am limited in what I can achieve without him. He would normally carry my coffee outside while I make my way with my crutches. It is the simple things like this that carers do that go unnoticed. Carers are amazing. Caring husbands are a gift from above and I thank God for mine every day.

So I shall sit here for a little while longer with my musings & eventually the fog will lift enough for my body to move a little more freely & I will feel more connected to the day.  I love it when that happens 😊

 

If you’re looking for genuine support, care, understanding & friendship, you are so welcome to join my closed Facebook support forum, Medical Musings with Friends . It’s a safe place to connect with others living with chronic & complex diseases, who truly understand the daily challenges. A warm welcome awaits.

I’m also a Contributor at “The Mighty”

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To Laugh or Cry?

Laughter

Yesterday I had a really interesting appointment with my Orthopaedic Surgeon.

 An interesting appointment indeed! It was one of those when you just don’t know whether to laugh or cry. My husband and I have a great relationship with my Surgeon and he knows I understand the ins and outs of my bone disease as well as he does..Basically neither of us or the rest of my medical team have a clue what’s going on and there we have it…the reason for not knowing whether to laugh or cry!

So the short version of a longer story is that I discovered yesterday that my x-rays on my broken femur, taken a week ago, show that the bone graft surgery I had 5 months ago in an effort to encourage my non healing broken femur to kick into healing mode, has completely dissolved. The bone has disappeared. It should have adhered to the broken bone and helped it to heal. X-rays 3 months ago clearly show it was there, clinging to the broken bone but now…..my leg looks as broken as it did 21 months ago with no evidence  that any attempt at a bone graft ever existed.

Not good news and my Surgeon is scratching his head. This idiopathic bone disease is just crazy.

We did confirm though that the surgery 3 months ago to place the rod in my other leg was definitely needed. He explained there was a fracture in there that hadn’t shown on the MRI that was ready to snap my leg like the other one did. The only evidence that something was wrong with the leg was my pain levels and  the MRI  showing  Bone Marrow infiltration due to the bone disease, so we are so glad we acted on that before another major emergency erupted. He also told me that the right leg has dead bone through the entire length of the femur. He explained it will take another 6 months at least for me to recover from the onslaught of all the surgeries & that my body is constantly draining as it tries to heal which is leaving me in a  state of constant exhaustion. Nice to know there is a reason for that at least!

Of course on top of basic surgery healing tiredness, we have to factor in the ongoing battle with the bone disease, its unknown prognosis and Rheumatoid Arthritis. My RA is in a massive flare due to stopping a range of meds in the hope that doing so might have had a positive effect on bone healing. It hasn’t, so I will be spending the next few months getting my RA medication up to speed again. Hopefully that will mean on some level there will be some pain relief in sight and that any side effects from starting the drugs again will be short lived.

Back to the bones….My Surgeon now needs time to have a good think about what to do with my non healing break. The main danger at the moment is that the existing rod in the left leg could snap under the strain of supporting a break for over 21 months and counting.  However I am physically not strong enough for more surgery so we both agreed to wait for another 6 months before any further intervention to give me time to heal & have a holiday from it all. I need that emotionally more than anything else. I am just so so tired. Oh, did I mention I was tired??? 

 While I’m not happy with my body and this rampant bone disease, I am relieved not to be going under the knife for a while. My crutches will continue to be my friends  for the next 6 month.

So to laugh or cry…it’s a bit of both but I’m determined not to lose my sense of humour. Laughter just feels so good, don’t you think?

4 week and counting

I’m nearly 4 weeks post surgery and this time around seems so much harder than all the others. I think the main reason for that is because I was only 8 weeks post surgery on my broken leg when I had this rod inserted into the other leg. Having 2 legs with titanium rods from hip to knee is a different sensation too. For the moment I’ve lost both limbs. The bruising from the thigh has travelled down to my foot and each morning it gets more dramatic and interesting….not to mention painful!

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I’m more reliant on my crutches than every before and my activity levels are nowhere near where I would like them.

That will improve over time, although the jury is still out on the “case of my dead bones” and all that might entail.

So in the meantime I wake everyday eager and hopeful for some improvement to my quality of life. There are glimmers each day. I can make the morning coffee now, I can potter around the house slowly, very slowly, dusting. I even managed to get out last week for the first time, granted it was for a blood test but I have grander plans for this week….a visit to my GP and maybe even a coffee out. I’m also slower lowering the dose of the stronger pain killers. Getting that balance right is tricky but I am keen not to stay on them for longer than I have to.

We know there is a strong possibility in 3 months that I am going have to go through this all again and have the rod replaced in my broken leg. That thought horrifies me. I know though that for the moment I just need to focus on the here and now.  I need to focus on recovery and if in 3 months I have to go through more surgery, my track record tells me I’ll cope 😊