Versus Arthritis

They have come far in the last 2 years, which is why it was so exciting and inspiring for my daughter and I to be asked to participate in the Versus Arthritis campaign. I look forward to the continuing progress they are making in educating and highlighting the needs of people with various forms of the condition, for which there are over 200. I’m glad they also incorporate TV adverts to help spread awareness to a larger audience, as it is important to me that the wider community are included so we can all support each other the best we can.

Here you can read the Campaign that my daughter and I did with Versus Arthritis, click here if you would like to read about my experience. But not only that we had the amazing chance to work with their team on creating these videos for their campaign, if you would like to take the time to watch them you can do so here, and here.

Lockdown

So, I managed to catch a break after my spinal injections 3 months ago, and enjoyed it as I never know when things will switch on me. Well boy, did my body switch on me! About 3 weeks ago I woke up with severe costochondritis, the whole right-hand side of my upper chest. I found it very difficult to get up so just rode it out as usual and as quick as it came the next day it was gone. But the next morning I woke up with my neck in a severe spasm, so annoying and extremely painful. I literally had to put my hand behind my head to lift it off the pillow. Was the sudden upper chest pain a warning? who knows…

Now I have dealt with a few neck spasms before but this one was with a twist, something I had not felt before. I have more degeneration in my neck so maybe this is why, but what do I know! My neck felt so locked I could only literally turn my neck a cm to the left and an inch to the right, and of course the pain was off the chart, that I got an emergency course of diazepam from my doctor to help relax the muscles. I had to wear my neck brace to ease some of the pain. Wearing a neck brace can weaken the neck muscles and is only recommended in extreme cases.

When I was able to get out of bed, my balance was so off, I felt like, and would actually sway, my balance was so off. I had to hold on to anything nearby. I could look up but if I looked down, I felt like I would fall over. 16 days of pure hell, I started to experience pain in the back of my head which I have never felt before, searing pain like my head was going to explode. I tried heat and ice but didn’t make much difference, but the pain meds helped somewhat.

Now I sleep on the left side of my bed where I have a rail to help me up, but I couldn’t look to the left to reach anything on my bedside table, so swapped sides with Mr W. This in itself felt weird because my side is my side and his, his. To be fair I just had most of the bed because I had so many pillows all over the place. One morning I woke with the pain in my head so bad that told me an A&E visit was necessary, but I had been thinking about it for a while, that’s why I contacted my/consultant first for advice, but the whole Corona thing had me scared to go, but my daughter did take me. We masked up and off we went. I was triaged very quickly, had bloods done and also a head CT. I was given an injection to help with the dizzy feeling and indeed it helped, my blood pressure was sky high but the head CT was clear. I eventually was sent home with blood pressure meds and told to check it every day and meds for the dizziness.

A few days later everything calmed down, my neck was loosening up and the head pain disappeared and I didn’t feel unsteady anymore. I even moved back to my side of the bed but my neck has less movement than it did before this episode began. I know I had my people worried and I will always struggle with that. Just yesterday I woke up and it has started all over again although less extreme.

I have been blown away by the support I have received from friends and family and you know who you are. I can only thank you from the bottom of my heart. Mentally and physically I feel I don’t have much left to give, but I will get my mojo back.

 

Lessons learnt

There is always laughter and joy through the tears

 

 

Empathy goes a long way

 

1. People with chronic pain seem unreliable (we can’t even count on ourselves). When feeling better we promise things (and mean it); when in serious pain, we may not even show up.
2. An action or situation may result in pain immediately. several hours later, or even the next day. Delayed pain is confusing to people who have never experienced it.
3. Pain can inhibit listening
   and other communication skills. It’s like having someone shouting at you, or trying to talk with a fire alarm going off in the room. The effect of pain on the mind can seem like attention deficit disorder.So you may have to repeat a request, or write things down for a person with chronic pain. Don’t take it personally, or think that they are stupid. 
4. The senses can overload while in pain. For example, noises that wouldn’t normally bother you, seem too much. (Sensory overload)
5. Patience may seem short. We can’t wait in a long line; I.e social distancing outside a supermarket! or can’t wait for a long drawn out conversation. 
6. Don’t always ask “how are you” unless you are genuinely prepared to listen.
7. Pain can sometimes trigger psychological disabilities (sometimes temporary). When in pain, a small task, like hanging out the laundry, can seem like a huge wall, too high to climb over. An hour later the same job may be quite OK. It’s ok to be depressed occasionally when you hurt.
8. Pain can come on fairly quickly and unexpectedly. Pain sometimes abates after a short rest, or not. Chronic pain people appear to arrive and fade unpredictably to others.
9. Knowing where a refuge is, such as a couch, a bed, or comfortable chair, is as important as knowing where a bathroom is. A visit is much more enjoyable if the chronic pain person knows there is a refuge if needed. A person with chronic pain may not want to go anywhere that has no refuge (e.g.no place to sit or lie down). My friends know this…
10. Small acts of kindness can seem like HUGE acts of mercy to a person in pain. Your offer of a pillow or a cup of tea can be a really big thing to a person who is feeling temporarily helpless in the face of encroaching pain.
11. Not all pain is easy to locate or describe. Sometimes there is a body-wide feeling of discomfort, with hard to describe pains in the entire back, or in both legs, but not in one particular spot you can point to. Our vocabulary for pain is very limited, compared to the body’s ability to feel varieties of discomfort.
12. We may not have a good “reason” for the pain. Medical science is still limited in its understanding of pain. Many people have pain that is not yet classified by doctors as an officially recognised “disease”. That does not reduce the pain, – it only reduces our ability to give it a label, and to have you believe us. As my neurologist once told me, we understand the hard wiring but we are yet to understand the soft wiring.

Lessons learnt

Music is my go to, what’s yours?

 

 

Will it ever end? Continued

20SundayJul 2014 

Posted by andie01322 in Uncategorized 

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As I learn to adjust to a different and new situation,
I won’t call it a painful situation because that would be silly
Something else takes hold; I’m not a negative person, quite the opposite in fact
So I don’t expect one thing after the other to happen to me, it just does
Sometimes I feel like I’m dealt these challenges to spare someone else, is it because I can handle it?
I don’t want to handle it anymore, enough is enough, but will it ever end?
Having the reins on the fibro is a blessing, not in disguise because it is clear to see
Now once again I can’t find a comfortable position to sleep
It has been lingering in the background testing my patients for months
And has now finally made it clear I’m not going to be left alone
Back in that hospital gown again, I’m ready and prepared
Hopefully deal with that weakness when I’m climbing the stairs
I’ve been told I should get it checked out, but is there any point
The last time it took a knife and scalpel to sort it all out
I want a rest, I want a break, and I’m simply not ready to start the process again
It was on the right but now it’s the left, after growing my hair I don’t want to shave it again
I will continue to battle this badly dealt hand because the people around me won’t allow me to hit the ground
Only he knows when it will end… 

I have been spending most of this week so far in bed. What started with a severe attack of costochondritis, then a full-blown neck spasm with what feels like a trapped nerve. The post I wrote back in 2014 reminded me that it keeps on coming… luckily enough it took less than an hour to get my doctor to sort me out a stronger muscle relaxer. What’s scary is; if my doctor wasn’t as accommodating or just too busy to help me through this, during the crisis we are all going through. 

I’ve read articles where parents are scared to take their sick children to hospital, in fear of catching Corona Virus, I can relate, and I’m sure many of you can too. Just because some of the conditions many of us have are not listed on any NHS government list, doesn’t mean we are not vulnerable. All I can do is put my life in god’s hands. 

Look out for each other… 

 

 

Coronavirus

What in the world is going on I ask myself? This time last month I was sitting in my rheumatologist’s office being given good news that all inflammatory markers were looking good. But unfortunately, there was still something bothering me. Since mid-last year I noticed painful lumps on either side of my neck, hence why my GP sent me back to the rheumatologist, thinking this was a flare up of R/A, I didn’t know at the time that they are swollen lymph glands. But clearly according to blood tests that’s not the case. So as usual I am left wondering and suffering extra pain in an already painful neck. The severe crashes I’ve had with fatigue the last 6 months made me think maybe CFS/ME is also going on but once you’ve been diagnosed with Fibro you are really left to your own devices. I decided to look into it, and found an endocrinologist I wanted to see who specialises in this. I got a referral letter from my GP then Corona virus took hold of the country, now didn’t seem like the right time… 

Not knowing 100% what is going on in my body I am still taking precautions regarding this virus. So many of our worlds have been turned upside down in a matter of weeks, I’m still struggling to get my head around it all.  Everyone will have their own concerns and my heart goes out to all who will or have been adversely affected by this tragic situation. I am grateful for my family under one roof, but has been an adjustment.  For now, we have food and loo roll! 

 

I have had to order prescription meds sooner than I would normally just in case there is a disruption in supplies, I do not wish to go into withdrawal… 

I’m literally rationing my paracetamol which I use as an addition to my pain regime. Other family members use it during difficult times, there are none in the shops! 

Family members have no job now. 

Uni degrees turned upside down, will there be reduced uni fees? and still having to pay for homes they are not even in! 

Family members with health conditions. 

Foreign holidays cancelled. 

I’m trying to keep a cool head about it all at the same time rather concerned about it all. 

We all really have to try and keep each other positive during this crisis and check in with our people. Find things to be grateful for and let’s pull together. Big shout out to our emergency/public services for everything they do for us. 

.

 

Being chronically ill and caring for others

Looking after our loved ones when we ourselves are sick is nothing new to most of us. I’m not talking about when we have a cold or flu and we get up and carry on. I’m talking about the physical challenges I have and its getting harder and harder.

This week Monday was my daughters  birthday, I had a busy taxing day ahead of me as I had an appointment at the pain clinic first thing in the morning. That went fine and was in and out within 1 ½ hours. Then was a visit to my sisters as she lives around the corner to the hospital. Whilst I was there, my son called me whom most know lives and studies in Oxford. He was not feeling well and was in bed, asking me to do a shop for him for the next day. What happened soon after feels a bit of a blur now, but within a few hours of talking to my son on and off, he was calling 999. The feeling of helplessness was overwhelming, the palpitations in my chest hurt…

My husband was in a meeting and I couldn’t reach him for what felt like the longest half an hour, during this time I was practising my deep breathing. Normally when we travel to Oxford its planned and we travel out of rush hour time, this time we were on the road as soon as it was humanly possible for him to get home. My only comfort was his bestie accompanied him to the hospital and kept me informed on the journey regarding what they were doing for him and where they actually took him. Seeing him hooked up to an IV with a cannula in his hand was an indescribable feeling, one I wish to not experience again any time soon. Long story short we’ve had to bring him home to be cared for whilst he recovers.

The pain I felt the next day was off the chart, having travelled 2hrs to Oxford and 2hrs back. Sitting in the hospital for hours with him and not hitting my pillow till 2am. Waking up at 5am to give him his second dose of antibiotics, the list goes on. But I just kept on until I couldn’t. With the help of my girls helping in different ways to care for their brother, meant I could deal with my pain and exhaustion.

For me to care for him whilst others were in and out of the house meant he had to be near me. Thank god, for my sofa bed in the lounge, because I simply couldn’t keep going upstairs to give him what he needed and to check he wasn’t burning up! I had a tray with everything on it that I needed to nurse him back to health as quick as possible, rather than walking back and forth in the kitchen. Having him lay next to me has been comforting for both of us during this challenging time.

Day by day he is improving and will be back to the hospital in Oxford on Sunday for further tests and finishing his last week.

Spinal Stenosis

Due to a change in circumstance, my health insurance provider has changed. Over the last 25 years, I have been fortunate enough to access medical care in this way. Even when companies have changed their own providers, I have had what’s called continuation of care because I was in the middle of treatment. This time I have had to declare my previous operations and they don’t cover pre-existing conditions. I have tried to get around it but to no avail. Being back in the wonderful world of the NHS after a 5 year gap is something I am getting used to again. So I have been referred back to the pain clinic, I waited 17 weeks for that appointment, had an MRI the very same evening and the follow up  5 weeks later. Unfortunately, I have further herniated discs and spinal stenosis in my cervical spine and lumber spine. I am waiting for an appointment for an epidural and nerve block injections… Even that I had to fight for, he really underestimated the amount of knowledge I have and my persistence to get what I wanted.

Spinal Stenosis

Spinal stenosis is a narrowing of the spaces within your spine, which can put pressure on the nerves that travel through the spine. Spinal stenosis occurs most often in the lower back and the neck. If the spinal cord becomes compressed this will lead to pain, cramping, weakness or numbness. It is a common condition, and anyone who has been diagnosed with this will of course experience different symptoms. Some may have no symptoms at all.

I have also been referred back to rheumatology because of the pain in the small joints in my hands. During that doctors visit I expressed the concern I had for two lumps on either side of my neck. I was told these were swollen lymph nodes, common signs in rheumatoid arthritis. I waited 20 weeks to see a rheumatologist.  I was sent for blood tests and now waiting for an MRI mid Dec and a follow-up February 2020! The pressure on our NHS is no joke and who knows what the future holds. I really am taking each day as it comes.

 

Safety First

 

A few weeks ago I plucked up the courage to go back to my local leisure centre for a sauna and a swim. The last time I went was about 2 years ago and  after 3 consecutive weeks, what felt like I was doing the right thing, I ended up on a hospital table once a again. Although it was an impromptu visit, I still had to put a plan in place as driving the car wasn’t an option. I called the centre and asked what facilities they had to store my wheelchair (electric) whilst there; the receptionist had to put me on to a manager as she didn’t know. I explained my situation and he said;

“We do have a disabled changing room you could leave it in, but someone may think it’s for anybody to use, or it may get stolen. I tell you what I’ll let you put it in the staff room when you arrive but you may not be able to do that every time as we have different managers on different days”

The sun was shining and off I went, navigating the ridiculously unfriendly pavements and curb drops. This, I have learnt is a lesson in itself and very scary at times. I arrived and was shown to the staff room where I left my chair for the duration of my time at the centre.

When it came to leaving, I had to wait a while as the receptionist was on her own and busy with a customer. When she was free, she called the manager. It was a woman this time, someone I recognised, and off we went to the staff room. I expressed my gratitude for allowing me to use their staff room, but of course me being me expressed how unacceptable it was for me not to have somewhere to store my chair. Her response was as follows:

“We are really sorry there is nowhere safe for you to store your chair, could you not disengage the controls?”

“You could leave it in the buggy park”

My answer was no, I will not disengage the controls; you can still move it in manual mode.  And the buggy park is just a space out of the way which is not suitable. If there was a rail (like a bike rack) in the buggy park area to padlock it to, then yes.

She listened to my concerns, and noted that when this building was refurbished recently, they didn’t think of such issues and told me to fill out a customer complaint form and put my contact details on it as senior management are good at responding to customer complaints. Once again, there is always a group of people forgotten about… I am yet to hear anything back, so I guess it’s time to write a letter!

Lessons Learnt

Always call ahead when visiting a new venue, you may not always want or need to stay in your wheelchair all the time.

Freedom

 

Having gained back my freedom by getting behind the wheel again was great, feels a bit like getting a new gadget to play with. But then that curve ball hits me again, sigh… you’re probably thinking well what now lol. Well when I get hit, I don’t stay down for long, and a challenge I’ve been dealing with for a long time that rears its ugly head every now and then, has become extreme, excessive, and really scary as I don’t really know what can be done about it at this stage.

I have problems with my shoulders and my arms which is nothing new to me, but if I use my arms too much, or even the smallest of tasks such as combing my hair or brushing my teeth, exercises using my arms, or even cleaning a baking tray for example, my arm, especially my right arm becomes redundant. I experience complete weakness in the arm and shoulder, then my hand will spasm and cramp into a curled position which I find impossible to move. If my arm is hanging down by my side, it feels like I’m holding a lead weight and its pulling through my shoulder, the spasm normally lasts for about half an hour but the weakness lingers. Both my arms are problematic but being right handed is troublesome. Many times, it brings me to tears when it happens because I will normally be in the middle of something then can’t finish. I use to hide it when it happened, but not anymore.

Like I said, nothing really holds me back and I’ll keep pushing on with a smile on my face, as I have so much to be grateful for. Now of course when this does happen, driving with one arm in a sling is not practical and walking has its challenges when my body is flaring therefore I have to rely on others for trips out. This has been my normal for a very long time but felt it was time to get a scooter so I could get out on my own a bit more. Whilst doing my research and visiting a mobility shop I tried a few scooters and realised, well hubby realised I wouldn’t be able to hold my arms out comfortably and ride it. I normally hire one in my local department store and found myself avoiding this of late. So I tried out a power chair in the shop and it was amazing, my arms could rest comfortably on the arm rests whilst operating the chair. This was a game changer for me; I was excited and nervous at the same time.

As some of you are aware, I now have my power chair and I will be eternally grateful for the family members who helped me purchase the one I wanted. Its little things like being pushed in a manual wheel chair and not being able to converse properly with whomever is pushing me especially in a noisy environment. Now I can ride beside someone and converse without feeling like I need to raise my voice that is a big deal. At least now, I have more choices and for that, I am truly grateful.

Lessons Learnt

Being physically able to do what you want when you feel like it is a blessing, but don’t take it for granted.

Fear

The last month or so have again made me rethink life. I was stopped in my tracks once again; it wasn’t sudden as I had prior warning so to speak, I was dragging my leg around like it wasn’t my own. What was a shock was the sudden shut down of my normal, and the intensity of the pain levels. My back went into spasm and that was it, if you know you know…

I become enclosed in this bubble that only a few can penetrate. In this bubble so many emotions are floating around, ANGER, FRUSTRATION, SADNESS, FEAR, DETERMINATION, ANXIETY. When you have something and someone snatches it from you, it pisses you off right?  Well it’s the same with your health; I couldn’t sit up; stand for more than 5 mins, drive, and shower, make a meal, and so on and so forth.

The wave was huge this time and a swear I drowned a few times, but as usual there are people around me that literally save my life time and time again. After 21 days, yes, I was counting; I could feel my body coming back to some sort of normality. When that bubble bursts, all those emotions are released and you can see clearly again. GRATITUDE, EXCITEMENT, FREEDOM AND AN OVERWHELMING SENSE OF CALM, AND LOTS OF HAPPY AND SAD TEARS, but then I’m also left with this sense of fear when I start to gain control of my body again. I was taught and keep getting reminded that I need to carry on doing the things I want to do and need to do despite the lingering pain but it’s not easy.

Prime example, the simplicity of taking a shower, something that most people take for granted, was a huge mix of emotions. How long can you stand? How long can you sit? Is the water going to irritate your skin? Am I going to be shattered afterwards? During this crisis the first initial shower although quick, felt so amazing I cried as I felt the water wash over me, overwhelming…

Another example, my friend called me and after a general catch up asked me if I wanted to go for lunch. The fear that flooded my whole being was extraordinary. At this point, I had not left the house for weeks, no further than the garden. I pondered on it and thought about all the ifs, but had to remind myself that I do actually want to go and that it’s going to be great. She came and picked me up and we had a lovely catch up. I was in pain when I left and my pain levels were the same when I got back although shattered.

A few days ago, I got back behind the wheel and the sense of freedom is indescribable, as specially as the sun has come out to play. But before I did I was fearful, but I’ve done it before and will continue to do it again. I love the quote “FEEL THE FEAR AND DO IT ANYWAY” I remember when the children were younger and they had an exam or a challenge at school. I would always tell them, it’s never as bad as you think it’s going to be. They would come home and say, “Mum you were right, it wasn’t that bad”. Something I have to constantly remind myself, unless my body is physically telling me NO, that activity is a no go of course.

Lessons Learnt

What doesn’t kill you gives you a lot of unhealthy coping mechanisms and a really dark sense of humour!

Explaining chronic pain Pt1

Explaining chronic pain pt2