Category Archives: Ehlers-Danlos Syndrome

hEDS Update April 2021

I’ve been promising to do an update on my Ehlers-Danlos Syndrome for ages now, but to be honest I’m finding it difficult to know where to start! I was diagnosed with hEDS at the age of 42 by a rheumatologist who specializes in hypermobility disorders after having my pain and other issues ignored and fobbed off for decades. Eventually, Dr Google and I had a strong suspicion that faulty collagen was behind my lifelong symptoms and this was confirmed in 2010, much to my relief. You can read more about my hEDS journey in this post.

As a child I had the following red flags:

Easy bruising
  • Widespread joint hypermobility.
  • Constipation.
  • Easy bruising.
  • Thin skin which split easily and left wide scars.
  • Fatigue on walking or standing for long periods.
  • “Knock knees” (which are caused by collapsing high foot arches on standing).
  • Inability to run long distances, which affected my lungs.
  • Hand pain and fatigue when writing.

As a teenager, these were joined by:

Widened, atrophic, cigarette paper scar from spinal surgery
  • Spinal surgery for rare congenital spinal stenosis (ie narrowing of the spinal canal).
  • Lordosis (ie an exaggerated curve in my mid back).
  • Mild scoliosis (ie my whole spine curves to one side).
  • Dental overcrowding (I needed 4 molars extracted to make room for the rest of my teeth).
  • Daily headaches.
  • Chronic nausea.
  • Poor proprioception.

In my late thirties, the pain in my back became severe and my mast cell disease, which had lurked in the background all my life, began to escalate.

Then in my forties all hell seemed to break loose:

Thickened skin
  • Mast cell disease and a newly developed Histamine Intolerance threatened to kill me.
  • Subluxing joints (ie joints which partially dislocated but eventually pop back in on their own or with self-manipulation) which particularly affected my ribs, fingers and jaw.
  • Loss of hypermobility, particularly in my back. I also had severe ankle stiffness in the mornings, which made walking difficult. I am now very stiff all over.
  • Headaches went, to be replaced by horrendously painful migraines both with and without aura.
  • Severe, widespread, unrelenting pain.
  • Severe eye floaters and very dry, sore eyes.
  • Thick patches of skin over bony joints such as my knees and elbows, which can be discoloured.
  • Severe, drug resistant GERD (ie acid reflux).
  • Fatigue.
  • Muscle weakness.
  • The only way I could sleep was on my side propped up front and back with pillows, otherwise pain kept me awake.

It was the fact that my pain levels increased substantially and I started subluxing my ribs in my early forties as I entered peri-menopause which led to me seeking a diagnosis. It is still clinically “anecdotal” that hormones play a significant factor in hEDS for women, but you only have to go on any hEDS forum to know that there is nothing “anecdotal” about the fact that both puberty and menopause play havoc with collagen and many women don’t even know they have hEDS until they hit their forties and the pain and dislocations begin.

I have to be honest and say the entire decade of my forties was a hugely difficult time health-wise. My mast cell disease made itself known in no uncertain terms and my hEDS hugely impacted my daily life. Add to that all the other symptoms of peri-menopause and it was not fun. Not fun at all.

In my late forties, I volunteered to take part in the Hedge research study but apparently didn’t fit the new 2017 EDS diagnostic criteria. Instead I was given the diagnosis of historic Hypermobility Spectrum Disorder. Ignored totally was my rare congenitial spinal stenosis, heart murmur, blue sclera, pizogenic foot papules (I didn’t have enough apparently), atrophic back scar (you need 2 scars for diagnosis – WTF?!), mast cell disease, my brother’s Marfans stature and the fact that his professional football career was cut short due to collagen issues with his knees, and my Mum’s history of spontaneous pneumothorax aged 42 (ie collapsed lung for no reason), pectus carinatum (ie pigeon chest which is strongly associated with genetic connective tissue disorders), mast cell disease and obvious hypermobility. If it looks like a duck and quacks like a duck chances are it’s a god-damn duck and I strongly think that the new criteria for hEDS is flawed and excludes many EDS patients.

I am now 53 and approaching menopause, and my symptoms are changing once more:

  • Stiffness is now very limiting. I struggle to put on my shoes, cut my toe nails, raise my arms above my head to wash my hair or look over my shoulder to reverse the car.
  • I stopped being able to lie on my front when I was about 43, but I now can’t lie on my back either as it’s just too painful.
  • If I sit in certain positions, particularly if my head is leaning backwards, I start to feel…….weird. Hard to explain, but like I’m going to pass out or have a seizure. I’m assuming the weak collagen in my neck is causing some kind of spinal collapse and/or compression.
  • For a year now I’ve had intractable pelvic pain and have to sleep wearing an SI belt every night. Despite that, many nights I’m woken by pain. It’s come to something when you can’t sleep on your front, back or either side and at times I’ve had to resort to sleeping sitting up.
  • Fatigue is ridiculous.

However, there have also been some positives to my hormones finally vamoosing, including:

  • Subluxations seem to have settled down. However this may be due to the fact that I simply no longer do anything, because I can’t cope with the resulting pain from activity.
  • My migraines seems to be much less frequent, although when they do appear they are fairly brutal and last for several days (I’m currently on day 4 of a stonker!).
  • Treating my mast cell disease and Histamine Intolerance through a low histamine diet has seen an end to my lifelong constipation ๐Ÿ˜ฎ. Ditto my chronic nausea and it’s now very rare I ever feel sick, after suffering almost daily for forty years.

I think it’s a combination of declining hormones, having the aids, supports and adaptations I need for daily living, and tailoring my activity to my symptoms which have helped my hEDS to stabilize albeit I’m at a fairly low level of functioning. It’s now rare I need to wear my Oval 8 finger splits or my back brace, but that is clearly helped by the fact that I simply don’t do much physical activity any more because if I do I can’t stand the resulting pain. I also use my braces judiciously, for example when I’m editing my photos I always wear my wrist brace as I know if I don’t my right wrist will kill me from using my pen tablet, and I also use a neck brace because sitting still for long periods gazing at my monitor sends my neck into really painful spasms. Getting the right orthotic insoles for my shoes has helped my knee pain, although it did take 2 years and several types before I found ones which suited me (I even had some custom made and they were the worst by far!). Using a push button kettle helped my wrist pain and of course using my mobility scooter has helped with both fatigue and pain and enables me to get out and about without too many negative consequences. Ditto my automatic car.

I was tortured for a whole year in 2020 by dreadful back and neck pain, which I thought was menopause related but which turned out to be more down to my twenty year old mattress and soft pillow. Changing the mattress and pillow on my bed to more supportive memory foam helped enormously, so it’s always worth looking at potential other reasons for new or increased symptoms!

So, that’s where I’m at. hEDS now has a big impact on my every day life and I definitely feel old before my time. It’s bizarre to go from being hypermobile your whole life to suddenly being painfully stiff and inflexible and it’s seriously taking some getting used to. However, so far I’ve found ways of working around my limitations although I mourn being able to sleep in my usual position, or sitting crossed legged which has always been super comfortable even at the dinner table! Only time will tell what the future holds.

Weekly roundup

I’m not gonna lie, this week has been beyond stressful and exhausting but as I’ve already vented about that in this post you’ll be delighted to know I’m not going to dwell (I can hear the cheers of relief from here ๐Ÿ˜).

Yesterday I saw my bestie in person for the first time since last summer. We are now allowed to meet up to 6 people outdoors, and as it will soon be said bestie’s birthday I drove the 35 miles to her house with her gift. The weather forecast had said it was going to be 11C and cloudy, so I’d put my thermal vest on and taken my electrically heated throw with me expecting to freeze my wotsits off, but the Met Office lied through their teeth. It was so hot I burned my chest and feet, and went to bed last night stinking of aloe vera and Germolene. To sit outdoors in the sun after 6 months of freezing winter, listening to the birds singing and having girlie chat while eating ice cream was nothing short of heavenly, though, and worth every second of looking like an over-boiled lobster ๐Ÿ˜†.

Thursday was also sunny and I met up with a photography friend for tea and cake by a local river. I was being treated because we were celebrating one of the biggest achievements of my photography journey to date! Over Christmas I tried something new and produced my first ever series of pictures, which I tentatively entered in massive global competitions, not expecting to get anywhere as I was competing against the best photographers on the planet. And for months I did just that – got absolutely no-where – so no-one was more surprised than me when this week I received an email to say I had been awarded in one of the world’s largest fine art competitions. ๐Ÿ˜ฎ and double ๐Ÿ˜ฎ. It means so much for my images to be recognised in my chosen speciality and in a competition which specifically rewards innovation and creativity in photography. To say I am tickled pink is the under-statement of the year!

I’ve really missed my photography this year. I just haven’t had the time or energy to create anything new, but I’m hoping when we get the situation with my Mum more under control that things will calm down in the next couple of weeks and I can get back to doing that which I love. I also must do some laundry ๐Ÿ˜.

Right lovely people, I need to get up and take the hound out on his jollies so I will love you and leave you. Until next week, take care and stay safe x

Weekly roundup

I can’t believe I’m writing my weekly roundup post already and have no clue where this week has gone. Lockdown restrictions are finally ending after 3 months and we are now allowed to travel slightly further afield (while still staying local) and can have up to 6 people in our gardens (but not in the house).

Tuesday was the first really warm day we’ve had so far this year, so with my newfound freedom Bertie and I had a gentle potter round a local reservoir 4 miles from our house. There was a camper van parked in the car park (camping is not allowed yet) and we met a French family (fairly sure they weren’t fucking local) but other than the lockdown cheats we had a lovely time. On my way home, I received a text from my next door neighbours inviting me to their garden for a drink at 6pm. I’m usually in bed by then, but as it’s been months since I had any physical social interaction I said I’d love to, and had a very pleasant couple of hours chatting in the chilly evening sunshine.

Wednesday evening was our annual digital image competition at my camera club and I won the open section which was fab! I would normally get a trophy, but as the shops are still shut we can’t get them engraved so I’m not sure what’s happening with that. I have literally only had the time to take 1 new photo all year so far, a still life of some apples I’m calling Gravity, which makes me really sad ๐Ÿ˜ฅ. My photography gives me so much pleasure I’d be gutted if this year I didn’t get to make any pictures.

I’ve spent the weekend investigating my drains as I have a god awful smell which has suddenly appeared in my utility room. All the drains are thankfully clear, so tomorrow I plan on taking the u-bend off under the sink to see if that’s gunked up. If the waste pipe is fine my only option will be to spend ยฃ160 getting a camera passed through my outside drains to check for cracks or leaks. I’m desperate to find the source of the smell cos it’s absolutely rank ๐Ÿคข.

This morning I had a Zoom brew with my bestie. We were hoping to meet up outside now we are allowed, but it’s suddenly gone baltic here in the north of England plus I’d promised my Dad I’d sit with my Mum this aft so that he could go for a walk, so we ended up online instead. For different reasons we are both having a tough time of it, so it was therapeutic to have a chat and I know I felt less alone at the end of it โค.

Well my lovely friends, it’s nearly time for Line of Duty so I’m off to make a brew, open a packet of Haribo and get snuggled under the duvet with my electric blanket on although I’m absolutely buggered and will no doubt be snoring and dribbling by half past nine! Until next week, stay safe x

Weekly roundup

I have had a ridiculously busy week and have woken this morning with a raging sore throat, which is M.E.’s way of telling me I’ve done too much. Much of the activity has been social, though, which is absolutely lovely and a welcome change from months of isolation.

Monday night I took part in a Zoom committee meeting for my Camera Club, which sounds desperately dull but it was just nice to be in the company of other human beings and after we’d gone through the agenda we stayed online for a more social chat.

Wednesday night was my Camera Club, which involved another late night (10pm is about 6 hours past my usual bedtime and several members commented that I looked like shit!).

Thursday afternoon I met up with a friend I haven’t seen since last summer due to the Covid restrictions and we went out and about for a couple of hours taking photos with the sun shining, the birds singing and the spring flowers blooming. It was glorious just to be outside in the fresh air, but I was absolutely knackered that night not to mention crippled as my hips continue to be tortuously painful. Pottering to the loo and back is about my walking limit at the moment, so having to be on my feet for 2 hours (albeit with copious bench rests) was a big ask. I am very de-conditioned following a year of lockdown and it’s going to take a long time to get back to where I was in terms of fitness.

On Tuesday I received an email from a Camera Club in the midlands. I was due to speak there at the end of April but their speaker for this week was unwell so they asked if I could step into the breach, which meant Friday was another late night. Three late bedtimes in one week has been a killer and I do feel very MEish this morning ๐Ÿ˜•.

My bestie (who has M.E.) had her Covid vaccine this week and the following day felt like she’d been run over by a ten tonne truck. Thankfully, though, when I spoke to her yesterday she was a bit brighter however she isn’t yet totally over the effects. My parents are both booked to have their 2nd Pfizer vaccine this Thursday, which hopefully should provide them with 95% protection against the most severe effects of Covid. Neither of them had any side effects from the first dose, however I am a little bit concerned about reports that the second Pfizer vaccine can make you feel rough so I hope it doesn’t knock them about too much as neither of my parents are feeling great to start with.

My Mum is still in pain from her fall but hasn’t had too bad a week all things considered, however it is clear she now needs significant amounts of care. I’ve been going to help her shower (despite the fact I only shower myself twice a week as I find it utterly exhausting), put her tablets up every week and do all of their shopping, health care related stuff and paperwork. They have a cleaner for three hours every Wednesday but my Dad does everything else including changing the beds, all the laundry and ironing, all the cooking (except weekends when my sister-in-law makes them a meal) and fetches and carries for my Mum all day long.

The strain is really getting to him, baring in mind he is 81 years old, and this week he started to feel unwell which is looking like the start of a Sjogren’s flare โ˜น. He has permanent neuropathy in both legs from his Sjogren’s, but other than that hadn’t had any troublesome symptoms for well over a year. However he’s back to feeling dizzy, unbalanced, nauseous, fatigued, his legs have suddenly gone weak and he has noticeable pallor in his face. As luck would have it, he has an appointment with his neurologist by phone on Tuesday so we can have a chat to her about the situation.

It’s clear that neither he nor I can keep up this level of care for my Mum, as neither of us are well enough ourselves, so we had a chat yesterday and Mum has thankfully agreed to have some home care. My sister-in-law is one of the managers of a good local care company, so she has arranged help with meals and showering starting a week on Monday which should take some of the pressure off my Dad and I. We have put it off this long due to the Covid infection risk, but as of this week both my parents will have been fully vaccinated so I’m now happier for them to be around other people.

Having said all that, I won’t have been vaccinated and having people traipsing in and out of the apartment puts me at much greater risk of infection. I really can’t see an alternative though ๐Ÿ™.

On that cheerful note I’ll go and get some breakfast. I was so exhausted yesterday that all I had to eat was toast for breakfast, 5 breadsticks with hummus plus a pear for lunch, and toast for supper so I’m really quite peckish this morning! Take care and stay safe x

Weekly roundup

The best laid plans of mice & men oft go awry, and my plans have gone awry in spectacular fashion this week.

Monday seems so long ago that I can barely recall how I passed the day, though I do know I was at my parents’ house as usual doing the various jobs they line up for me each week.

I also remember my week started with a massive disappointment. I have had my eye on a building plot for several months and last weekend put in my best and final offer, but despite the fact it was a really, really good offer the bastard vendor still rejected it. Alongside the plot is a 4.5 acre field and what he really wants is to sell both the field and the building plot together. It’s been for sale for a year now though and hasn’t sold because no-one wants or can afford the whole shebang, but he still won’t accept offers on just the plot even though the particulars state the plot is available for sale on its own. I don’t know whether to complain to the estate agent that if the vendor won’t sell the plot on its own then they must remove it from the market. It’s at best disingenuous, and at worst illegal, to offer something for sale if you have no intention of actually bloody selling it!

Tuesday night I went to sleep as usual at around 10.30pm and woke at 2.30am feeling weird. My nervous system was going bonkers, I had palpitations, my breathing rate had increased and when I took my blood pressure, which is normally 110/55 when I’m in bed, it was well up at 134/68. These are all signs that my mast cells are dumping histamine and other mediators, but what I couldn’t work out was what on earth had set them off. Nothing unusual had happened that day, I hadn’t eaten anything different to normal and wasn’t under any kind of new stress.

The clue was that the reaction was accompanied by an entire hour of hot flushes, alongside nausea and period type pelvic pain. So I had a look in my diary and although I haven’t had a period in nearly 5 months if I were still following a 28 day menstrual cycle my period would have been due this week. It’s the only thing I can hang the reaction on.

I didn’t get any sleep at all that night, so Wednesday I spent the day feeling like death warmed up. So much so that I didn’t attend my camera club in the evening even though it’s the highlight of my week. Thankfully though I had no more reactions during the day and apart from being woken by a couple of intense hot flushes I slept pretty good that night.

In fact, Thursday I woke feeling the best I have in many months. I was relatively clear headed, actually had some energy (I’d forgotten what that felt like) and was eager to start my day. I took Bertie out as usual in the afternoon for a lovely walk and we were just heading home when my mobile phone rang. It was my Dad to say that Mum had fallen off her stair lift ๐Ÿ˜ฅ.

I raced through to town to find my Mum in agony. She’d landed on her bottom and her back was killing her, but she’d also banged up against the wall and if she moved her right arm so much as an inch she screamed in pain. As she has osteoporosis it didn’t take a rocket scientist to realize she might have broken something.

My parents live literally yards away from their small local hospital, so I initially rang them to ask advice but unfortunately the x-ray department had shut 5 minutes earlier so they told me I had to ring an ambulance, which I’m pleasantly surprised to say arrived within minutes.

To cut a long story short, my mum needed x-rays but we were all reluctant to take her through to the city. It’s a long journey and the hospital is still a huge Covid risk (someone I know went in there 3 weeks ago to have surgery on a broken ankle, caught covid and died – he was 51 years old!). So as a group we decided they would give her painkillers at home and I would take her to the x-ray dept up the street the next morning.

After spending 3 hours in the minor injuries unit on Friday, the upshot is Mum has a stress fracture in her shoulder and faces the next 4-6 weeks in a sling. FFS. Even worse, though, is that we have spent 2 months getting her nausea and bowel issues under control only for this to have set them all off again in spectacular fashion. She feels horribly sick 24/7 and pukes if she tries to eat anything. The doctor gave her a stemetil injection in the hospital and sent her home with some ondansetron (Zofran), and although it’s stopped her physically vomiting it hasn’t touched the nausea and consequently she hasn’t eaten now since Thursday. I have ordered her to drink a small amount of water every 30 minutes, though, otherwise her kidneys are going to pack up altogether.

Why do these things always fucking happen on a weekend? The health centre is shut and it’s a total waste of time getting some locum GP out who doesn’t know her or her history and who will prescribe some temporary and wildly inappropriate generic drug which I can guarantee won’t work. If there were an easy solution to her nausea we would have sodding well found it by now ๐Ÿ˜•. So I’m hoping she can hang on til tomorrow when I’ll be able to speak to her own GP.

Tomorrow evening I am giving a talk at a Camera Club in Devon. It’s a new talk and my plan was to practice it this week so that I could get the timings right and was fluent. That went out of the fucking window, though, didn’t it and with 24 hours to go I have not practised the talk once. Because of my brain issues I get muddled on a good day and when I’m in a stressful situation it gets much, much worse so to go in front of 50 people totally unprepared is freaking me out no end. When I’m giving a talk I also usually spend the whole day resting so that I’ll have some energy, but of course that’s not going to happen tomorrow is it if I’m trying to get medical help for my Mum.

I sometimes feel that the Universe is conspiring to fuck up every single aspect of my life and there are days where I just want to lie down in the dust and admit defeat. Coping with not only all my medical shit, but my parents’ medical shit and the dog’s medical shit, is fucking exhausting and I don’t have any energy to begin with ๐Ÿ˜Ÿ. Life just recently has not had many positives and the unrelenting stress without any kind of reward is hard to take.

Apologies for ending on such a downer but quite honestly life so far this year has been tough going and my usual optimism and joie de vivre appears to have buggered off alongside my hormones. There are days I would kill for someone to just make me a brew, let alone run me a bath, offer to make dinner, hoover my car or put my bins out – all of which is a long ago distant dream. More than that, though, is the total lack of emotional comfort and support and there are days I’d sell a kidney for a cuddle.

Bertie doesn’t care how hard my days are. As I type this he is pushing his nose against my arm demanding a tummy rub and at 9am will unceremoniously remind me it’s time for walkies by sitting in front of me and woofing til I move. It’s come to something when my dog has a better life than I do, though he’s unaware that in my brain fogged stupor on Wednesday I cleaned his teeth with Vagisil. As my bestie said, it could have been worse – I could have smeared Verbac doggie toothpaste on my lady garden and had a gleaming white vag visible from space ๐Ÿ˜†.

Sweet Relief

For the past year I have been tortured by my body. I have long since had SI joint dysfunction as part of my Ehlers-Danlos Syndrome, but in the past twelve months it has developed teeth and been accompanied by neck problems, numbness and stiffness on a grand scale. The pain would be annoying, but bearable, during the day but the second I lay down at night to sleep it would go into overdrive. The area around my SI joint would throb, I had shooting pains down both legs right to my toes, it felt like every ligament was burning and tearing and within minutes my left leg would be numb from my hip to my ankle.

For several months I barely got any sleep, being woken every hour on the hour by pain and when I did finally drop off I was woken by menopause induced hot flushes. It’s no wonder I’m exhausted. In addition, many mornings I would wake with both arms completely numb, a very sore neck and as stiff as a board from my head to my feet, until it felt like there was not an inch of my body which was pain free.

As we’ve been in lockdown for most the last year, there was no opportunity to be referred to the specialist EDS physio at my local hospital and it was pointless asking my GP for advice, as she clearly admits she knows nothing much about hypermobility disorders. I was on my own (no change there!).

Mast cell disease induced hives

I tried all the usual tools in my armoury. Having a hot bath before sleep. Wearing very tight cycling-style support garments to bed, which cut me in two and gave me horrible stomach ache. Two SI belts, which helped a little in the early stages but then ceased to give me any relief. Massaging my trigger points, which actually made the pain worse. Kinesy tape, which left me with the worst hives I’ve ever had, and making sure I was well supported by pillows all around me (which aggravated the hot flushes ๐Ÿ˜•). Nothing helped and by the beginning of 2021 I was just about demented.

I was talking it over with my bestie a couple of weeks ago and she asked me if I’d considered a memory foam topper for my mattress, which might help with the pressure points and numbness if nothing else. I have no idea why, but I hadn’t even thought about my mattress until she brought it up – I just reasoned my hEDS was playing up probably brought on by the menopause and I would just have to lump it. However, I was desperate enough to try anything so I started investigating mattress toppers.

I have a king sized bed and discovered that a good, supportive, memory foam topper was going to cost a couple of hundred pounds so I reckoned if I was going to be spending that much money I might as well go the whole hog and buy a new mattress. Mine was 15 years old and I spend nearly all day every day in bed, so it’s had a fair amount of hammer. However, there are loads of different types of mattress to chose from and I was totally bamboozled.

I’d seen an advert on the telly for the Emma mattress, which is foam based, so decided to have a look at that one first. I read the thousands of Trustpilot reviews and it was 5* virtually all the way. The good thing about the Emma is that it comes with a 200 night trial period, at any time during which you can return the mattress free of charge if you don’t like it. In addition, if you think the mattress is too hard or too soft the company will send you a free topper to change the feel. It has a 10 year guarantee and the fact there was a sale on and I would get 30% off the ยฃ729 asking price, giving me a king sized mattress for ยฃ516, was the icing on the cake. I looked at similar types of mattresses, such as Simba and Tempur, but they didn’t seem to offer anything different to the Emma and were more expensive, so I placed my order and just hoped I’d made the right choice.

48 hours later my mattress was delivered! It came rolled and vaccum packed in a box, which was weird considering the size of a king mattress, but which enabled me to drag it up the stairs myself. The worst part was hauling my existing mattress off the bed on my own (bearing in mind we’re in lockdown and I have no-one to help me), but I somehow managed it and was then able to place the new one on the bed slats, before taking off the plastic wrapper with the special tool sent and unrolling it in situ. It started to inflate immediately, which was properly weird, though I’d say it took a good 3 days to reach its full size. When placing your order, you can pay ยฃ30 to have your old mattress taken away by the courier but as I didn’t know whether I’d like the new mattress or not I decided to keep mine for a while, and will pay the local Council ยฃ30 to take it away if needed.

The first night on the Emma was a revelation! It was soft, squishy and comfortable but at the same time very supportive – I have no idea how the company have managed to achieve both softness and firmness in the same mattress. I only woke from sleep twice rather than every hour, and both of those occasions were due to hot flushes not hip pain, and I woke the next morning with half the level of pain and stiffness I’d gotten used to. It’s now a week later and my hip and back pain are significantly better already ๐Ÿ˜ฎ. I can’t even begin to tell you the difference this mattress has made to my life.

The worst downside has been the off-gassing. The smell this mattress gave off for the first 3 days was so bad it actually made me feel sick, despite the fact I had the bedroom window wide open 24/7. I’ve now had the mattress for a week and it still smells, although less than it did and at least I’m now able to close the window. For someone with MCAS who struggles with chemical smells, though, I expect it would cause huge problems.

The other downside is that my neck is actually more sore and I have woken with a migraine every morning since I got it. It could be nothing to do with the mattress and everything to do with my hormones which have been playing up big time this past week, or it could be that my neck needs to get used to being in a different position as my back is more aligned. I guess time will tell. I already have a supportive memory foam pillow, but maybe I need to get one which is height adjustable in order to find the correct position for my neck now. I’m sure I’ll be able to find a solution.

All in all, though, I am delighted with my new mattress and wish I’d thought about getting one five years ago! My daytime back and hip pain has diminished by about 75% and my night time pain by about 55% and I’ve only had the thing a week โ˜บ. My bestie, who also has a foam mattress, tells me hers softened over the first few months of use so I’ll have to see how it settles down, but if it becomes too soft I can always request a firmer topper from the company. If only my hot flushes would cool their jets and I could get a full night’s kip I’d be one very happy bunny, but for now I’ll settle for not being in agony.

Weekly Roundup

My emotional health is definitely not great at the moment and I am borderline depressed. Due to my isolated existence I genuinely didn’t think I’d be that affected by the pandemic and it’s come as a bit of a surprise. My bestie and I were talking recently and neither of us could work out why we are so fed up – it’s not like we go out much anyway or interact with lots of people as we are both largely housebound, and when lockdown ends our lives won’t be that much different! I think it’s the lack of choice which is getting to me. Spring has tentatively arrived, the weather is glorious and I just want to get out in nature with my camera, but I can’t as we’re still not allowed out for recreation. Roll on 8th March when the recreation restrictions end, though I can’t meet up with my friends until 29th March when the local travel ban is lifted.

I have now not had a period for 4ยฝ months and think my mental health isn’t being helped by the total absence of my hormones. My emotions are up and down like a bride’s nightie and I am deep in hot flush land. They’re not too bothersome during the day, but being woken from sleep engulfed in a raging inferno several times a night is zero on the fun scale and is making me seriously knackered. This morning I’ve woken with a migraine and as I type this my brain is pulsating rhythmically against my skull. I am both weepy and irritated for no good reason. It goes without saying I am well and truly over my 9 years of menopause transition.

I was so unwell and MEish on Wednesday that I asked my Dad to take Bertie out for me in the afternoon. It’s the first time in 3 years I’ve had to get help with him, which shows what a shit day I was having ๐Ÿ™. On the plus side, the fact that since my Dad’s double hip replacement he felt well enough to come and walk the dog is absolutely brilliant. It will do his flagging mental health the world of good to feel useful again, not to mention the fact that walking has been his life and for him to now be able to get out and about again doing what he loves is awesome.

My Mum still hasn’t had the results of her urgent CT scan which took place on 1st February. I chased it up a week ago and was told they hadn’t received the report from radiology and they would request it and post it to us, but clearly that hasn’t happened. I rang again and this time was told that as Mum is due to have a repeat endoscopy next Friday they usually wait and send all the results together, to which I replied it is totally unacceptable to make someone who may have cancer wait 6 weeks for scan results! The secretary agreed with me and said she would get a report sent to Mum’s GP asap. I’ll believe it when I see it.

Right, enough with the whining – I’m putting myself off my breakfast ๐Ÿ˜„.

I had a victory this week! In November, I bought an HP printer from the Curry’s website. It had an offer of 15 pages of free ink each month for the lifetime of the printer through the Instantink scheme, which is why I chose this particular printer over all the others. But when I came to sign up for the scheme there was no free option and it wanted to charge me every month. I spent several frustrating weeks talking via online chat to HP who tell me the offer of free ink was withdrawn in December. I argue that my contract of sale included free ink and I expect it to be honoured.

I get nowhere, so in January I send a snail mail complaint to Curry’s HQ (there is no email option) as my contract of sale is with them, not actually with HP, but I hear nothing. Then out of the blue this week I get a phone call from HP asking me if the issue has been resolved ๐Ÿ˜ฎ. The customer service guy was absolutely lovely and took me through deactivating the printer and re-setting it up and I now have the free ink I should have been enjoying since last year.

Way too many companies are taking the total piss during the pandemic, thinking that customers will have no way of complaining or exercising their legal rights. But I won’t accept being treated unfairly and am like a dog with a bone, gnawing away until I get that to which I’m entitled. It shouldn’t be this way though – you should just get what you fucking pay for!

The biggest thing to happen this week, however, was delivery of a new mattress which has changed my life! I’m going to do a separate post on that, so watch this space.

My head is now banging, I’m starting to feel nauseous and my eyeballs are burning, so I’d better go and take some Ibuprofen and have some breakfast to see if I can get the migraine to calm it’s little self down. Before I go, though, I’ll leave you with a view of the sky snapped from out of my bedroom window last night. The moon was super bright, which made the clouds really pretty ๐Ÿ™‚.

Until next week lovely friends, stay safe x

Weekly roundup

I’ve had a lovely, quiet, relaxing week. It was much needed after everything I’ve had to do at my parents’ home and with my Mum’s health recently and I feel so much better emotionally for the down time. My body is still knackered but ๐Ÿ˜‰.

Speaking of my Mum, despite being referred for a CT scan under the 2 week suspected cancer rule we have heard nothing in the three weeks since the test, so on Friday I rang the GP to chase it up. They had heard nothing either, so told me to ring the hospital – when did it stop being the sodding GP’s job to keep on top of test results?!

We had had a phone consultation with the head of Gastroenterology and it was he who had booked Mum in for the CT scan on 1st Feb, but his secretary had no results. After much searching she told me I had to ring a Consultant in the upper GI department, despite the fact Mum has had no dealings with him and a colonoscopy is bowel not upper GI. So I ring his secretary, who tells me there is nothing on her system.

She asks me why I’m ringing her as my Mum isn’t their patient and they deal with upper GI issues, so I have to explain that the Gastro guy’s secretary told me to ring her! Lots of huffing and puffing later she tells me she’s found my Mum’s CT appointment on her system but there are no results. This is actually against our rights – if you have any investigation under the 2 week rule you should be given the results almost straight away, not 20 days later. She tells me she’ll get in touch with radiology and get them to write a report, which will be posted to us. What the fuck would have happened, though, if I had not chased this up? Her GP was clearly not on top of it, the Consultant we saw had no knowledge of it and some random Doctor at the hospital we didn’t even know existed was apparently in charge but didn’t even know my Mum was his patient. FFS-with-knobs-on.

This country is fundamentally broken – but that’s a post for another day.

After posting a new form to the Small Claims Court, after I inadvertently buggered up the original application, I received a letter saying the case against TalkTalk in respect of the 7 months my parents have had a broken landline has been accepted. Hurrahhh!!! It was sent to “the Defendant”, who then contacted my Mum. It was the first time anyone from TalkTalk has contacted her since October last year, despite knowing that her phone line was still faulty and the fact she is on their priority register as a vulnerable person. She refused to speak to them and told them to contact me instead, which they did. I, however, also refused to speak to them on the phone as they record all calls and had used selected conversations against me at our recent Dispute Resolution, while withholding the conversations which would have backed up my side of the case. I obviously don’t record all my phone calls so was at an unfair advantage in the evidence stakes, so I have requested they email me instead so that I have a record of what is said.

We are starting to see the back of a very long, cold winter here in the north of England, and while parts of me are delighted, the rest of me is dreading the arrival of warmer weather. My menopause-induced hot flushes are getting out of hand and as I type this I can feel one coming over me. In a few seconds my fleece will be off, my duvet will be flung back, my ceiling fan will be on full pelt and I will be soaked in sweat, even though it’s 5C outside. If I’m this hot when it’s freezing I will be in danger of internal combustion when it’s 20C ๐Ÿ˜ฎ.

Having said all that, on Tuesday I spent an hour in the garden having a tidy up and doing some pruning. It’s the first time it’s been warm enough to do any outside jobs since October and it fed my soul to be out amongst nature, even if it is still physically crippling me 5 days on. Hellebores, snowdrops and aconites are in flower, my winter heather looks gorgeous, daffodils are poking their heads through and my buddleia and rose bushes are starting to leaf bud. The House Sparrows were busy diving in and out of the ivy and on my wall and the various nesting boxes I have on the house, chittering and squabbling, and two Robins were furiously fighting for territory. That this rejuvenation takes place very year is nothing short of a miracle to me and I love every second. This year in particular, with the promise of vaccinations and the end of lockdown, it feels like a whole new world is about to begin despite the fact my Mum had a new letter this week telling her she must continue to shield until at least 1st April.

This morning, after I’ve taken Bertie out, I am meeting a friend for a car coffee, where we meet in the car park of a local cafe providing take-outs and chat to each other through open car windows. It’s the person I stopped speaking to in October who is very controlling and demanding, and I am hugely conflicted about seeing him again. While I was in the front garden on Tuesday he happened to be driving past my house, so drew up and asked to speak to me. I didn’t have anything left to say to be honest, but he burst into tears and was quite distressed and being as though he’s elderly and very unwell I didn’t have the heart not to accept his apology. However, today I will be erecting very strict boundaries and if they are crossed the deal is off. At his age I suspect nothing will change, but that is his choice to make and equally my choice to walk away from.

Right-e-o my lovely people, breakfast is calling. It is 7.15am and the sun has already risen, so I am eager to begin this precious day. Take care and staff stay safe (my dyslexia is ridiculous this morning!) – the end is in sight x

Weekly roundup

I wake at 6am to the sound of my central heating boiler, which is usually whisper quiet but today sounds like a jet engine taking off. It reached -15C here this week so the very last thing I need is my boiler breaking down. I go look at the pressure gauge but it seems fine. Odd.

I fill the kettle for a cuppa but the cold water tap pressure is down and then it dawns on me – I have a leak somewhere. At the crack of dawn. In the dark and freezing cold. Fucking marvellous.

I check all the rooms in the house but thankfully nothing seems amiss. So I open the back door and water trickles to my feet. I have a cold water feed in my shed for the hose pipe and it is creating my very own 20 foot Bellagio Fountain on the patio. I always turn the feed to the hose pipe off during the winter, but keep the stop tap in the shed on because it’s dodgy and leaks a bit itself. Please God may the stop tap not have burst ๐Ÿ™.

I go and get a torch and, in my pjs and slippers, have to stand under the heart stoppingly cold fountain to reach the tap which I thankfully manage to turn off. I return to the house looking like a hypothermic drowned rat, all the while with Bertie running round my legs wondering where the hell his breakfast is ๐Ÿ˜†. I strip off, shivering, rub myself down with a towel and get into my fluffy dressing gown. I feed the dog, make a brew and am now snuggled back under the duvet with my electric blanket on full. I’m hoping to have thawed out by lunchtime! It was the perfect shitty end to a perfectly shitty week.

If you remember, I recently spent 7 hours putting together a court case against TalkTalk in respect to my parents’ non functioning phone line. Monday morning an envelope plops through the letter box from the Court, telling me I can’t bring a case on my Mum’s behalf because the contract is between her and TalkTalk not me and TalkTalk. I have no clue what it’s on about, but deduce I’d filled the N1 form in wrongly. You are allowed to sign as a “friend of the litigant”, but I’d signed the wrong box in effect making myself the claimant.

I ring the Court to ask if it’s OK for me to re-submit the correct form and am told “We can’t give legal advice, I suggest you contact a solicitor”. The whole fucking point in using the Small Claims Court is that it is supposed to be consumer friendly and you’re not supposed to need a solicitor! I ask what’s happened to the ยฃ205 fee I sent with the original claim form and am told “I’m sorry, as I said we can’t give you legal advice”. After the month I’ve had with one thing and another it’s all too much and I burst into tears on the phone. The lady on the other end shows no compassion whatsoever and ends the call.

I then spend 3 hours re-copying the entire claim and filling out a new N1 form. I have no clue if I’m allowed to do that, or if I’m doing it correctly. After 7 months of fighting all I want is for my elderly, disabled, pandemic-isolated parents to be able to use their phone, which is their only contact with the outside world not to mention the emergency services, and not one single organisation in the entire country wants to help me. I feel utterly defeated. There is no justice available to your average man in the street any more and big companies know it.

Wednesday I went to my parents’ house to fit the bed rails I’d ordered for my Mum and to set up her new call alarm wrist band, which I wrote about in this post. Wednesday night was my Camera Club via zoom but I was so tired I think I slept through a good third of the talk ๐Ÿ˜ด.

My sleep situation is pretty dire. I’m waking almost every hour having a hot flush and when that isn’t waking me the shooting pain from my left hip all the way down my leg to my foot is doing the job instead. I’m going to bed in very tight lycra support shorts, wearing 2 SI belts to try and keep my SI joint stable, and with my TENS machine on all night which I’m not supposed to do, but the pain refuses to be silenced ๐Ÿ˜ฅ.

The only highlight of my week was a call from my bestie on Saturday, who was about as joyful as I am! We had a good old whinge for nearly two hours and it helped to know I’m not the only one struggling and wondering when the fuck it’s all going to end. We are now in week 6 of our third lockdown here in England and everyone is over it. It’s only in the last few days that the infection rate has started to come down, as the new variant is so much more potent than the original Covid strain. The good news is that all over 70s, certain key workers such as health and care staff, and the clinically extremely vulnerable have now been vaccinated and we’re starting on those people in their 60s. However, it’s thought it will take until September to vaccinate all adults in the UK so we’re facing restrictions for months yet.

Contagion was on TV last night. I hadn’t seen it before and it was insane to watch a movie made in 2011 which almost perfectly mirrors the current global situation. To have made a film where an airborne virus originates in bats in China, and to be talking about “social distancing” and “R numbers” and who should get the vaccination first, let alone the conspiracy theorists and empty supermarket shelves, a decade ago is beyond prophetic. The thing which makes my blood boil, however, is that if a sodding screen writer could see this coming in minute detail why couldn’t our governments?!

After all that whining, I’ll end on a positive note. It has been the coldest winter for ten years here in Britain and we’ve had two months of daily sub zero temperatures. With daylight ending at 4pm and the constraints of lockdown it’s felt like a lonnnng winter, but this week when I walked Bertie down by the river I noticed both the Oystercatchers and the Lapwings are back from migration ๐Ÿ™‚. Lapwings are my most favourite bird and their swooping mating rituals and pee-wit-wit-wit-pee-wiiiiittt call is my favourite sound of spring. Here’s hoping the birds know something about the end of winter that we don’t!



Weekly roundup

I’m going to start with some brilliant news for a change, after all the doom and gloom of recent weeks. I have been worried sick about how I will live in the world with Covid endemic in the population. I can’t risk having the vaccine after the last inoculation I had put me in bed for ten years, and even though other people will be having the vaccine they can still be carriers for Covid and infect me. However, this week a research group based in Canada announced they had developed a nasal spray which is 99.9% effective at killing Covid ๐Ÿ˜ฎ.

The SaNOtize nasal spray provides a barrier within the nasal passages and upper airways. It contains nitric oxide which prevents and treats early infection by destroying the virus and impeding viral replication within the cells in the nose. In addition, nitric oxide has been shown to block the ACE-2 receptor essential for the virus to infect our cells. The UK are now conducting trials on the nasal spray and it is soon to be trialled in America. That we might be able to buy a simple nasal spray over the counter to combat Covid is freakin’ awesome though you’d still have to be super vigilant about keeping your hands sanitized.

It’s been another stupidly busy week. I’ve spent 8 hours putting together a case against TalkTalk, my parents’ telephone provider, in the small claims court. They haven’t had a properly working telephone line now since July 2020, which is putting their lives at risk as it’s their only contact with the outside world and more importantly the emergency services. In fact, when my Mum discovered my Dad bleeding at 2am following his hip replacement surgery and she rang the emergency services the phone line cut out twice. After complaining for months and getting nowhere, I opened a case with Arbitration who ruled against me in December claiming that because the engineers couldn’t find the fault it didn’t exist and I hadn’t proved there was one. Why-the-hell would I spend months of time and precious energy complaining about a fault if it didn’t exist, and how the fuck am I supposed to prove there’s a fault?! So now I’m having to take TalkTalk to Court. I don’t need the stress, but my parents absolutely need a working phone especially as they are disabled, my Mum is very poorly and we’re in lockdown.

My Mum has decided she wants 3 rooms in their apartment decorated and a new carpet put in her bedroom. I could strangle her for wanting to do this during a freakin’ lockdown, especially with strangers coming in to the house and potentially bringing the virus with them, and I’ve tried my best to talk her out of it but she is so depressed I think she just wants something to focus on. It’s not her who has it to organise though, as she’s not well enough, so I’ve had to arrange a decorator who is coming on Tuesday, new curtains, and a new carpet despite the fact the carpet shop is shut! I know, I’m awesome ๐Ÿ˜‡. Yesterday I was there for hours getting the rooms ready, including boxing up all the ornaments, taking down pictures and blinds and wiping down all the paintwork, for which I duly suffered tortuous pain last night.

My Mum has been so down recently that I also arranged a little treat for her. I adorned her bedroom with candles, put on some soft music, lay her on the bed covered in a duvet and gave her a facial. She loved it and I didn’t mind doing it one bit. She’s been so ill recently she hasn’t been drinking, and she’s lovely when she’s sober. It’s only when she’s drunk she becomes a stranger I don’t recognize or like.

On Monday, I’m taking her to the city hospital for a CT scan and today she has to swallow 2 bottles of barium liquid. She also has to follow a clear, liquid only diet so I had to go to Sainsburys for some beef consommรฉ, jelly and apple cordial as they are on her allowed list. Only, I forgot the bloody jelly so am having to drive 14 miles this morning to go and pick some up ๐Ÿ˜•.

I started on a good note, so I’m going to end on a good note. One of my images was chosen this week by the Photographic Alliance of Great Britain to represent the UK in the photographic world cup as part of a panel of images with the theme of ‘Creative Portraits’ ๐Ÿ˜ฎ. My friend encouraged me to put forward some images for selection, even though I didn’t think they would be any where near up to standard. Just goes to show you should always have a go, even if you think your chances are slim to none! The print world cup takes place every other year and is being held in France. Results expected in April so I’ll let you know how we get on.

Right, it’s breakfast time then I’m off out with the dog before going to town to the supermarket. The sunrise is spectacular again this morning and as I type this the sky is streaked with a deep blush red. It’s sodding freezing though and the north of England is apparently due 20cm of snow mid week. I’m beyond exhausted and so ready for spring and the lockdown to end.