The BIG move

Well a lot has happened in the couple of years that have gone by since I last posted.

We made the decision in July last year (2023) to move up to the north east which meant that Steph and Addison had to find their own place. They found a lovely flat in Epping and seem to be very happy there.  

Gaz helped us with part of the move, he lifted and he carried and he drove a van for us for which we were very grateful. Steph helped with packing boxes as I was struggling with fatigue and couldn’t do much at all. I am so grateful for her hard work and support during the transition to our new home.

Surviving Lockdown! 2020-2021

On 31 December 2019, the World Health Organization ( WHO ) was informed of a cluster of cases of pneumonia of unknown cause detected in Wuhan City, Hubei Province, China.  

The first case of the coronavirus (COVID-19) was reported to the World Health Organization (WHO) in December 2019 and was subsequently declared a public health emergency of international concern (PHEIC). The World Health Organization declared the outbreak a Public Health Emergency of International Concern on 30 January 2020, and a pandemic on 11 March 2020.

For us as a family this meant us all working from home on laptops. Schools closed, shops closed, businesses closed, the world closed!!! The NHS became the hero of this pandemic and those that were able to go to school came in to ensure that key worker children and vulnerable children were taken care of emotionally and academically. The search for answers began and communications from No 10 Downing street came in the form of daily press conferences. The whole world watched in horror as people started to die, in their tens, hundreds and even thousands! People were put into risk categories and for me this meant that I was advised strongly to shield until further notice. This meant that I was unable to leave the house at all. not even allowed to go out for a walk. 

2020 was going to be a big year for me from a health point of view. I was waiting for joint fusions on 2 of my fingers on my left hand and a knee replacement for my right knee. Already feeling unsure about life in general, I started receiving letters and emails saying that all my appointments were cancelled until further notice! This was incredibly stressful, I had no idea what was still to come.

Taking stock!

I have just come back to my blog and this is a post that has been sitting in drafts since 2018.  This gives you an idea as to what a couple of years it has been for me .  So i am going to post this now and follow up with an update shortly afterwards.

I am a fiercely independent woman with Osteo-Artiritis.  I have had a life full of illness and challenges.  As I get older it seems to get worse....... yet I am determined that I will not be beaten!  

I have always prided myself on my willingness to learn and also my desire to be a better person through my challenges I have faced in my life.  I would not be the woman I am today if it were not for everything I have gone through.  This year I have turned a half a century and have decided it is time to take stock of my life and focus on what is important to me and my family.  Saying that,  it starts with my family, they are the most important thing in my life and always will be. 

So what does taking stock actually mean to me?  well according to the Cambridge dictionary it means....

So here we go! thinking carefully about my life.......

I have OA in the following places in my body:

1. neck 
2. lower back
3. knees
4. hands
5. feet

Reality says that there is no cure for Osteo Arthritis,  it is also likely to get worse as it is a degenerative disease.  So what can I do to manage my symptoms......

Having been for physio on my most recent diagnosis of OA of my other knee,  the physio has shown me some good exercises to do to strengthen my knees.  I do however feel as though I am being treated bit by bit and not as a whole!  I had arthroscopic surgery in December on my right knee and feel as though it had not made a difference.  I also had a torn meniscus in my knee so was in a lot of pain, the problem is my followup from surgery is in july 2019, a whole 6 months after my surgery!!!!!! No physio has been given so I have had to go back to the doctor to be referred to physio.  And then the waiting game continues!  

In early February I ended up in hospital and was diagnosed with SVT (supra ventricular tachycardia)..  This was the scariest thing I have ever experienced and ended up with a heart rate of 189bpm and having  an injection of adenosine  to shock my heart into going up to 189bpm then bringing it down to 60bpm.  It feels like you are going to die.  I am now on beta blockers and waiting for my referral to a cardiologist to come through. 

 https://www.nhs.uk/conditions/supraventricular-tachycardia-svt/

So having had this health scare, I am going to take stock of the things that currently take up my energy and see what I can put a stop to.

1.  working as an Exams officer is hard work especially not being 100% able bodied.  the most challenging part of the job are the following:

• doing upwards of 10 000 steps every day
• lifting, fetching and carrying exam papers
• mental stress of following rules made by the Exam Board
• dealing with issues as they come up with students and parents

I have already cut down my hours to 6 hours per day but this does not seem to be enough to get the job done.

2.  housework:  really struggle when the house is a mess and feel the need to clean so that I can think straight.  grateful for a lightweight vacuum cleaner.

3.  shopping:  i need to use online shopping more to avoid having to pack bags and then carry them up the stairs to our house.

Enough for now.  Be back soon! 

Be Kind to Yourself!

Do you find that you miss out on a lot of social events due to flare-ups, surgery and recovery.  Surgery has become part of my life over the last few years and this Christmas I will be having another arthroscopy which will put me out of action for 2 weeks or so.  In this time I will be off work and I only started my new job in October,  I will miss the staff Christmas party and the secret santa and most likely not get paid for being off work. 

I have come to terms with the fact that my health is going to be tough and take one day at a time, but I also will not let it beat me!  I will do my best to keep in touch with friends over Christmas from behind my computer,  will probably be doing my Christmas shopping online and will hopefully be waited on hand and foot!

But what impact does this have on my mental health?  We are expected to attend all the events and if we don’t we are frowned upon,  having to justify why I won’t be at work as I get funny looks for even thinking about being off for 2 weeks?  It is so easy to doubt myself and try to do as much as I am expected to do.  My mind is naturally negative and every day is a fight to stay positive.  Again….. I will not let it beat me! 

Being a perfectionist doesn’t help either as I feel the need to do everything 100% and be at everything 100%.  I have worked on this for a few years following my epiphany that “I am going to dance like nobody’s watching”, but it is so ingrained in my mind that it is a daily fight!

My heart goes out to of all the homeless people this year who may have health issues to deal with as well as being on the street,  I cannot imagine how I would cope without my comfortable bed and warm winter sheets, my amazing family to look after my every need. 

The best advice I have been given was by a friend I worked with at school and he said to me “be kind to yourself”,  but what does this mean?  For me it means that I don’t have to judge myself for not being able to do everything and be at everything over the Christmas period.  I also need to let those that judge me know that their judgement will not influence my mood.  It means taking time out to be mindful everyday,  focus on my breathing and enjoy some me-time.  It means taking one day at a time in manageable chunks so that I do not get overwhelmed.  It also means allowing others to do for me what I can’t do for myself and not feel like a burden.

So I say “Be kind to yourself”, and wish you all a healthy Christmas and a restful new year.

Don't wait for me......

Over the years I have had to come to terms with losing my independence, mourning my "former physically fit" self,  allowing myself to need other people, being vulnerable with my pain when I cant take it anymore......... this is all about me though and I have recently come to think of what those that love me must have been going through.

I am privileged to have the most amazing husband in the world, he takes care of me physically 24/7 and when we are not together he takes care of me emotionally.  He loves me and he loves our family deeply. He would easily take on my pain if it would make it better for me.  He rubs my feet every night and reminds me to take my medication.    I have an amazing daughter that lives with us and she is happy to take me to hospital appointments and open jars for me, never with a hint of it being a burden to her.  She also encourages me to take time for myself and rest.  She never complains if I have to make changes to her "dating schedule" due to not being able to babysit because I am too tired. My son is newly married to his beautiful wife but we still have an amazing bond.  We work together and although we are now of different sites we still chat on the phone almost every day.  My grandson is 10 years old and doesn't really understand why grammy can't do things for herself,  but he is always happy to fetch and carry for me if I need him to.  His hugs warm my heart and my soul!  I also now have my sister living nearby and she is also very sympathetic to my health issues.  We talk regularly and she is always happy to help with anything I need help with.

So how do all these wonderful people in my life cope with my health issues?  It is so easy for me to get so caught up in all my struggles and not see the challenges my loved ones are facing.

I want to talk specifically about my relationship with my significant other,  the love of my life, my husband.  We married very young and raised a family from the start.  We have grown up together and are inseparable.  It became very clear to me this last weekend when we booked a hotel for a couple of nights so we could hang out and explore the area.  Our first day out and we went to speedway which I love,  we had planned movies and dinner but when I got back to the hotel at about 6ish I fell asleep on the bed and didn't wake up till about 2am as I hadn't had my sleeping tablets.  I felt really bad because my husband had not had dinner or been out either.  Although I said to him..... "Don't wait for me",  I understand how hard this must be to do.  But it is something I have come to terms with myself and feel I need to reinforce over and over again.  It doesn't mean you love me any less or you don't care,  I don't want you to sit around waiting for me to have enough energy to go out and do something together.   I give myself permission to rest and I give you permission to "Not wait for me". 

I do wonder how others cope with this that have the same challenges I face.  I would love to hear from other married couples about how things work for them.

Just a reminder darling,  I love you deeply and appreciate your love and support for me. 

Lesley
xxx

Distal Interphalangeal Joint Fusion

"So, I have been very quiet over the last year or so but that is simply because I have had a few surgeries. As I am getting older so my body is giving in more and more.  The arthritis is taking hold of my body but I am still determined not to be beaten."  ...........written a little more than a year ago and here i sit having had the same surgery but on a different hand.  I have been thinking why it has taken me so long to actually getting around to publishing this post and apart from the obvious one that it takes longer to type than usual....... it has been an intense year!

sometimes life just gives you no breathing space and this is what this last year has felt like! 

So...... Distal interphalangeal joint fusion...... what is it and how does it help me?  

"Arthrodesis

Arthrodesis is a type of surgery that joins (fuses) 2 bones in a diseased joint so that the joint can no longer move. It may be done when pain and disability or instability from a diseased joint can no longer be managed with medicines, splints, and other methods.

The surgery may be done on joints such as the fingers, knees, ankles, or spine. Depending on the joint and the particular disease the person has, different methods of doing arthrodesis are possible. For example:  Metal implants may be secured to the bones to hold them together until new bone grows to complete the fusion. Depending on the joint, these procedures may have high complication rates."

So having had my right hand done a year ago and having my joints fused with pins....... my consultant this time (a different partner) has done the fusion with screws, which is supposed to heal quicker.

I have also had all my other finger joints injected with steroids whilst under anaesthetic and to be honest it does seem to be healing quicker,  but the bruising after the injections was quite severe and really hurt. 


If anyone that has arthritis in their fingers I would highly recommend this surgery as it definitely takes the pain out of the joints (unfortunately there are a whole lot of joints in the hands and fingers so it is a short term relief) but it is definitely something worth considering.



I was booked off for 5 weeks from school but feel ready to go back 4 weeks post op,  my doctor says she has never had anyone ask for their sick note to be changed to go back to work sooner!  

I think for my own mental health I need to go back to work as I need to be around people.

I started driving again yesterday and found it a little painful but felt so good to get out of the house and go where I wanted to go without having to rely on other people. 

I have requested to go back to work early but on reduced hours and amended duties.

I think that taking it slowly is important but is also essential for my mental state of mind (but that is another blog for another day....)


So how has this helped me.  Well since the last operation last year i do not have pain in the joints that were fused. This just means that out of all the joint pains I have:  neck, back, knees, hands..... I now have less pain than before,  

On the flipside though, unfortunately due to the joints no longer being able to bend,  I don't have a very good grip anymore and tend to drop things regularly.  But you have to weigh up the pros and cons and less pain is definitely a pro so that's why I went for the second surgery on the other hand.

I hope that this blog may bring to light something that others suffering from crippling arthritis might find beneficial.

Till next time.  

Lesley  👌

Long time no see!

So I have been very quiet for quite some time and a lot has happened in that time.   Knee surgery..... Not really successful. Scheduled for joint fusion on my hands and life is so busy!  

Due to intense pain and over tiredness I can't sleep!  It's 1.25am and I am sitting upstairs so as to not interrupt my husbands sleep.  I have managed to tear my rotator cuff as well about a month ago and cannot find a comfortable position to sleep in!  Think it is time to get back into blogging as it is a good way to express what I am feeling!