I’m writing this update in February 2019, it is nearly two years since the end of ‘I want to live, not just survive’, so I thought that an update was in order. It’s been a mixed bag since then, some more aches, pains and new conditions but also some great memories too. Life is about balance isn’t it? So here goes with the updates!
I did my first proper solo trip in the Summer of 2017. I was tagging onto Ella’s tour of America and meeting her in New York, but I wanted to make more of my trip. I flew to New York and then I took a train to Washington and I stayed in an Airbnb near to Union station. I spent a great few days seeing all the sites and I loved it. The advantage that being on my own had was that I could take things at my pace, I could see what I wanted to see and I could get up and go to bed whenever I wanted. The one main drawback was that I was more limited because I was using a crutch and I couldn’t use a wheelchair because I had no one to push me. It reminded me that I could do anything I put my mind to. I could achieve what I wanted, I may have to make a few changes but I could get there.
In September 2017 I had a 24 hour ECG. Since coming out of hospital I seem to have had an issue with a high heart rate and often high blood pressure too, so it was being checked out. The report came back saying that my left ventricle was underperforming and that my heart was going too fast, but no one seemed too worried about. I wanted reassuring though and I went to a consultant recently and apparently I have a syndrome called inappropriate sinus tachycardia!
‘Inappropriate sinus tachycardia (IST) is a condition in which a person's heart rate, at rest and during exertion, is abnormally elevated for no apparent reason. People with IST often have resting heart rates greater than 100 beats per minute, and with even minimal exertion the heart rate often rises to very high levels. These inappropriately elevated heart rates are usually accompanied by symptoms of palpitations, fatigue, and exercise intolerance.’
(source https://www.verywellhealth.com )
Something else to add to my list of conditions and yet another one which included fatigue as a symptom!
Later in September 2018, I had another appointment at the Royal to discuss my hormone levels. Despite the fact that my thyroid had been relatively stable for some time the consultant still wouldn’t consider treating my growth hormone deficiency. They believe that if they treat my growth hormone then it could make my tumour grow again, which obviously wouldn’t be good. However, not treating it means that I now have to accept all of the symptoms which I get from it because it doesn’t look like it will ever be addressed.
‘Adults with growth hormone deficiency may have a wide range of symptoms. When these symptoms are severe, they can reduce people's ability to function – both socially and professionally – and this can dramatically lower the quality of their lives. These symptoms include:
decrease in the amount of muscle bulk and strength
increase in the amount of fat in the body (especially around the waist)
abnormalities in the amount of ‘good’ and ‘bad’ cholesterol. This can lead to an increase in the risk of heart disease
abnormalities in the blood and in the circulation
low energy levels and decreased stamina
impaired concentration and memory.
Apparently some people only have a couple of the symptoms but I have at least five out of the seven, you know me I don’t do anything by halves!
It does seem to be that every condition I have has fatigue as a symptom! Instead of treating my growth hormone deficiency they decided to increase my steroids from 15mg up to 20mg, unfortunately, I’ve not seen any change. I am awaiting a cortisol curve test, to check that my steroids are doing what they should be doing in controlling my cortisol levels. If my cortisol isn’t up to the right level I will have to take even more steroids. The issue with taking steroids long term is that it carries a raft of risks to my health which is too long to mention! One of them is that they increase my weight which has always been an issue for me. Although, if it gives me more energy then it’s worth a try. I did go to have the test done at the Royal in Liverpool but after seven attempts at inserting a needle for the cannula, they had to give up. I’ve always had issues when the doctors try and insert needles but this was the first time that they have had to abandon the test. What they are now doing is the same test but using my saliva instead!
To add to my list of problems in December 2017 I had a bump in my new car, I’d literally only driven it once before having the accident. It wasn’t a massive accident but as soon as I got out of the car my neck was hurting me. Ironically, I was about a 200 meters from the hospital because I was on my way to have some tests done on my hands. My neck had previously been pretty much pain free which is typical but it is now one of my worst pains.
2018 didn’t start well either because I was really dizzy again, I have no idea why but I had to cancel a weekend break away to London, which I never do. I think that I have only cancelled a handful of plans before because I hate doing it, I’d rather battle through and rest for days after than miss out completely. My friend Elaine found out that I had cancelled and she messaged me concerned because she knows that I never cancel.
At the end of January 2018, I began having physio for the issues with my neck which I felt sure were down to the accident as I’d never had the problems with my neck before. They helped to a degree but only for a short time which is frustrating. I had it for much of 2018 then someone suggested trying acupuncture. I’ve had it in the past but it didn’t really work for me but as my neck pain gives me so much trouble I thought that I’d give it a whirl. The first time that I was led to the treatment area was by another practitioner and when the man who was going to do my treatment was shown in he had a white stick. Not a small inconspicuous one but a huge one with a ball on the end! Yes, he was blind, a blind man was putting needles in me, only me. Only I could have a blind man doing my acupuncture, but to be fair he did a great job. However, after six sessions it wasn’t really working for me. My neck pain continues to cause me pain all day, every day. I now sit with pillows supporting my neck and I have a hot water bottle on my neck to help ease the pain. I am taking more pain medications than I’ve done for years and at the moment there seems no end in sight. I saw a surgeon and he said that it didn’t require surgery, yet, however, I think that it will in the near future.
The numbness and pain in my hands was getting worse so they were doing more tests to see what was going on. When I went for my results, the tests didn’t show a problem, but he suggested that the issue could be coming from my neck so he ordered an MRI. In August ‘18 I had my follow-up appointment with regards to the issues I was having with my hands and my neck. I walked into the room and the first thing that the doctor asked was,
“So you know that you have deterioration of the spine?”
“No, I didn’t!” I said, shocked because this was news to me. In the letter there is a complicated description of the findings of the MRI, but basically I have significant issues with my C5 and C6 vertebrae. I also have, spondylitis and he put this too.
‘On examination she had global jerky non-dermatomal weakness examined in both upper limbs. Reflexes present but generally hyporeflexic.’
So, simply, I had a a pathetically weak body and my reflexes don’t work as they should! Then he added for good measure, ‘I think if her symptoms continue together with her global muscle weakness then a referral onto the Neurologist for further investigation would be in order.’ All I could think was not again! I still haven’t requested the referral; part of me doesn’t really want to hope that they may be able to find something that they can treat and then the other part was that I worried what they might find.
‘While hyporeflexia might occur independently, it’s more often associated with another underlying cause.
What causes hyporeflexia? Hyporeflexia develops as a result of damage to motor neurons. These neurons send messages between your brain and spinal cord. Collectively, they send messages to the rest of your body to control muscle movements. This condition may also be related to one of the following:
Amyotrophic lateral sclerosis (ALS)..... a progressive neurological disease that destroys brain and spinal cord cells. Over time, this can cause muscle weakness throughout the body.
Guillain-Barré syndrome (GBS).....is another type of degenerative condition that affects your nervous system. With GBS, your body attacks normally healthy tissues, which disrupts brain signals to your muscles.
Chronic inflammatory demyelinating polyneuropathy (CIDP).......is marked by damage to the nerve fibers in your brain. CIDP can start off with symptoms such as tingling extremities or numbness in your muscles. Eventually, CIDP causes a significant loss of muscle reflexes.
Hypothyroidism……..underactive or “low” thyroid, this condition can lead to fatigue, weak muscles, and colder-than-normal body temperature.
Spinal cord injuries Certain spinal cord injuries can cause nerve damage, which can lead to weak muscles.
Strokes…..may lead to hypotonia, or low muscle tone in some limbs. Hypotonia is often temporary in most people who experience a stroke, but in some it’s permanent.
Medication side effects….People who take muscles relaxers may experience hyporeflexia as a temporary side effect.’
You can see why I’d rather wait can’t you? I already have hypothyroidism but I take medication for that, so surely it can’t be that?
Then weeks later at an appointment at the Royal with the endocrine team, I had an assessment and this is what they too reported,
‘Examining her she has general weakness in her lower legs.’
So he too agreed with the observations. At some time I suppose it needs to be looked into, but I just wish I could get one issue sorted before another one comes up.
In January 2019, I had an appointment with a cardiologist. I was referred after having scans and tests on my heart which showed that my pulse was highs and my heart wasn’t working as well as it should. He went through my tets and explained that despite my heart rate being high that was now normal for me and it wasn’t putting me at a higher risk of heart attack. This is what my letter explained,
'She seems to have a syndrome of inappropriate sinus tachycardia...she could consider taking beta blockers or calcium antagonists to help suppress the palpitations but Mrs Gray would prefer not to have too many tablets.'
‘Inappropriate Sinus Tachycardia (IST) is a condition in which an individual’s resting heart rate is abnormally high – greater than 100 beats per minute or rapidly accelerating to over 100 beats per minute without an identifiable cause…..The main symptoms of IST include:
Shortness of breath
Resting heart rate of greater than 100bpm
Sleeping heart rate of 70 – 90bpm
Minimal exertion, heart rate will rapidly reach 150bpm
Potentially related symptoms:
Would you believe another condition with fatigue as a symptom? So I could take medication but they come with a raft of side effects that I could well do without! So for now I’m not taking anything. Although at present I’m having one of my dizzy spells, it’s been going on for a couple of weeks but has gotten worse, is it down to my heart? Who knows?
I’ve had two eye check-ups over the past 18 months. During the first one, while I was having my fields of vision test, I missed four flashes. This is what the letter reported,
‘.....a few spots missed. In order to determine whether or not there is a developing visual field defect, I have asked for a repeat……..in 6 months.’
When I returned for a follow up I missed six but there was no concern noted. I’m not unduly concerned and because I wear contacts and glasses and I have regular check-ups at my opticians. So hopefully any further deterioration will be picked up. Then literally last week I started having issues with my left eye. It was sore and bloodshot and it felt like I had something in it. I left it for a couple of days to see if it went away on its own before I went to the opticians. The optician checked both my eyes and declared that I had an ulcer on my eye.
‘An eye or corneal ulcer is a painful sore that develops on the outer surface of your eye…...Corneal ulcers can be painful, and cause vision changes…….What causes a corneal ulcer?
Common causes of corneal ulcers include: Bacterial infections, Viral infections, Eye injuries or, small scratches on the eye, Dry eye syndrome. Contact lens wearers are at a higher risk of developing corneal ulcers….’
He explained that as a contact lens wearer I was more at risk, but I had been wearing my glasses for the previous two days and I’d only put my contact lens in the morning that I began to have issues. So he was a bit flummoxed as to why it had happened but he was hopeful that it would clear up on its own. Fingers crossed as ever!
So how are we all doing now?
Jack is still doing his music and now he also teaches guitar to primary school children, which he loves. Now he has all of the stories which come from working with children. I love hearing all of the stories because I miss working with children so much. He has a lovely girlfriend Tonicha, and they have helped each other grow in confidence. If you check out my Facebook page you can see that she’s a beauty and she is such a strong, sweet girl, I am so happy for them both.
Ella has her own Prince Charming, Matt, he is such a great lad and I’m so happy that he looks after Ella like she deserves. She finished her job at the nursery, and after she and Matt had originally been saving to buy a house together, they decided to travel Australia instead. After months of planning they went off to Australia on January 7th 2019 and it has certainly been a lot quieter at home. Ella and Matt are having the best time travelling. I even hope to go out to them at some point. I’m hoping they don’t stay there longer than a year but who knows, I wish them every happiness.
Me, I turned 50 in September and I think that normally I might have had feelings of being old, but for me, I was just happy to be 50. As I said at my little birthday party, for all of my closest friends and loved ones, ‘I don’t mind turning 50 because a few years ago, I never thought that I’d make it to 50.’ So I’m alright. I‘ve had lots of different celebrations and trips away to mark the occasion. And my present to myself was a mobility scooter. I have always hated being in a wheelchair and how people treat you but I love my scooter, I am in charge and it feels great. Travelling on my own should be a little easier using it, not without issue because unfortunately, the world isn’t really set up for people in wheelchairs or mobility scooters. Maybe that will change. Maybe I will help it change? Who knows?
This was originally what I wanted to achieve,
‘New Year has traditionally been a time when people make resolutions; to set themselves goals to achieve, to lose weight, to stop drinking, to eat more healthily. For me my resolutions went back to when I was in hospital after my operation, when I hadn't been able to sleep and I had some sort of epiphany or something, in the end, I turned on my light and wrote a list of what I wanted to do with my money, this was my list;
A cruise, with the kids
Do my drive and garage at home
Travel month by month
Tes take on a Spa retreat
Take mum and dad somewhere
Treat Book club to a weekend away
Take other friends out for meals etc.
Write a book...........’
I have achieved all bar do an extension, I decided in the end that it was a lot of trouble and I didn’t fancy all the mess. I obviously have a new list, I always have lists. The biggest thing on my list is to sell my house and move to somewhere smaller and more manageable. At present, I live in a four bedroomed house and the stairs are an issue as is cleaning it all and paying for it too. Both my children are in committed relationships so sooner or later they will be flying the nest and it will be just me and Charlie rattling around. Hopefully, a new place would be a more accessible flat maybe and it would mean that I would be far better off financially, which would be welcome.
To bring in some money and to keep me sane, I have written a further two books, this time fictional but based on experiences of my friends and myself too. Writing suits me but I’m going to try my hand at something else for a while at least. I still have ongoing battles about proving my disabilities to the benefits agencies which is frustrating but par for the course. I continue to go away as much as I possibly can and I live a good life. I’m much the same, still having too much pain and tiredness but as ever I continue my battle to do as much as I can. I am still looking for my own partner in crime, but I am happy on my own. I take as many holidays as I can, it’s finding people to go with that's the problem. I was considering going to America on a solo trip, before Ella and Matt went to Austrailia, now it might be Australia!
This excerpt is from the early days of my diagnosis.
‘When I get through this I am gonna travel and go to the places I want to go, as I'm not sure how long I have, as it's more of a manageable condition rather than a curable one. I'm going to get out and do things, not quite sure yet quite how I'll finance it but I'm gonna try anyway. Lying here it is still weird thinking this is happening to me, but hey ho it is!!"
So that’s it from me. I hope, that if you are fighting a battle, you have the help and support that you need, I know how important that has always been to me. Find a way through and try and stay positive and on task, and you will be surprised at how much you can achieve.
Love and best wishes, Anna xxx