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 😥. 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 £160 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 🤢.

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 ❤.

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

Why Do I Bother?

It’s been a tough Carer week and yesterday I was so exhausted and stressed I didn’t know what to do with myself. For a start, my Mum has stopped answering the phone. Every day for a decade I have rung at 9am and spoken to my Mum, but now she doesn’t pick up and my Dad answers instead. My deaf and confused.com Dad. So I ask how Mum is doing and whether she’s slept well, to which he always says “yeah, she seems OK” which tells me bugger all. I spoke to him on Tuesday to get their shopping list for Tesco and I could hear my Mum shouting in the background “tell her we need eggs” and “don’t get any more of that squash it was vile”, in which case WHY THE FUCK doesn’t she just speak to me herself?! She knows my Dad is useless with anything like that for crying out loud. It’s driving me insane.

The new care package started on Monday. A carer is coming Mon-Fri to cook them both lunch and to give my mum’s lady garden a wipe and cream and some clean undies put on. So I’ve made a recipe book which contains menus for 2 weeks in advance, so the carers know what they’re cooking and I can get all the ingredients from Tesco when I do the weekly shop.

Monday they were having corned beef hash for lunch and I’d bought a tray of veg for that. But when I went in the fridge on Sunday all but 2 carrots had gone from the veg tray. I asked my Dad where it was and he said “it’s for the corned beef hash”.
“Yes I know, I bought it, but where is it?”
“I’ve peeled it all and chopped it ready for the hash tomorrow, so it’s just ready to switch on”.
Quite what the carer did for the other 29 minutes she was supposed to be cooking lunch I have no idea.

I also spoke to Mum on Monday morning who was hugely out of breath.
“Why are you so out of breath?” I ask.
“I’ve been putting clean pants on” she tells me.
“Er, why have you been putting clean pants on when the carer is coming in an hour to help you do that?!”
“I didn’t want to have smelly pants on when she got here” she replies, which is rather like cleaning up before the cleaner arrives.

Tesco always deliver between 10-11am Thursday morning and as they were having kedgeree for lunch I’d bought some smoked haddock with their shopping, but when I rang at 9am my Dad was up at Morrisons.
“Has he gone to pick your prescription up?” I ask my Mum.
“Well, yes, but he’s also getting some fish for our lunch” she tells me.
God give me sodding strength.

I spoke to her last night and asked how the kedgeree had gone. “Oh, it was delicious” says Mum “and let me tell you about the fish from Tesco. Your Dad was worried about getting all the bones out (why was he getting the fucking bones out?), but with that Tesco fish he didn’t have to bother because not only was it boneless it was also skinned – isn’t that brill?” like I wasn’t the one who’d bought it and chosen it purely because it was boneless and skinned!

I know it’s all new to them and they are so used to doing things for themselves it will take a while for it to sink in that someone else it doing it now, but it is frustrating. I have very little energy myself, so to spend loads of it organising everything just for them to do it themselves feels like a kick in the teeth and there are days I genuinely don’t know why I bother.

Thanks for listening to my little rant. No-one said being a Carer was going to be easy, but I had no idea it was going to be this hard, frustrating, stressful and unrelenting.

I have three modes of living:

Exhausted

Beyond exhausted

Basically dead

Weekly roundup

The daily care package for my parents starts tomorrow. It’s been stressful and time consuming to set up, but fingers crossed it works because I am on my last legs and my Dad is also exhausted and tetchy. We’ve arranged for someone to come in Monday-Friday each lunchtime to make a meal and to wash my Mum. Then twice a week someone is coming to give her a shower. I also want the cleaner who comes once a week to change the beds, a job my Dad currently does, but so far I can’t get him to agree. Why the fuck not is anyone’s guess.

I went this afternoon to take a menu sheet and recipe book for the week, so that the Carer knows what she’s doing. Tomorrow’s lunch is going to be Corned Beef Hash and I’d ordered a tray of casserole veg from Tesco for the meal. I go in the fridge for some milk for a brew, and notice the tray is open and there is only 1 carrot left. I ask my Dad where everything else has gone and he says “it’s being used for the Hash tomorrow”.
“Yes, I know” I reply, “so where is it?”
“All peeled, chopped and in a pan ready” he beams at me “the lady only has to turn it on”.
It’s rare I lose patience with my parents, but I’m feeling like shit today and I can’t help myself. “So what exactly are you paying the Carer £25 an hour for then?” I explode. My Dad looks at me puzzled and I try to calm down. “It’s her job to make the dinner Dad, that’s why she’s coming and that’s what you’re paying her for!” It only dawns on me after I’ve gone off at him, that he’s so used to doing everything he can’t get his head around the fact someone else is going to be doing it. I feel terrible for getting tetchy with him, but it’s been a long week and I’m only human.

To be honest, I’m feeling utterly and completely overwhelmed. My own house is dirty and a tip. Paperwork is piling up unanswered. I have over 500 emails in my inbox, and as soon as I deal with 10 another 12 arrive. I’ve haven’t eaten properly all year as I have zero energy to make myself any food and I never seem to have a spare minute to just chill. It doesn’t help that my pelvis is so painful and as I’m sitting here typing this I have shooting pains down my left leg and my hip joint is throbbing like it’s got tooth ache. I could murder a pain killer.

Instead, I’m going to go for a bath despite the fact it’s 9pm and I’m totally shattered. I know it will help the pain and maybe help me sleep, but it seems like a big job. While the water is running, I’ll stack the dishwasher with the dirty pots that have been sitting on my kitchen counter since Friday.

Well, that was cheerful wasn’t it? Bet you’re glad you read this far 😁.

To end on a positive, I have now gone 6 months without a period (yayyyyy!) although I do still occasionally get period-type symptoms, for example I spent most of Thursday with period pain. But the best news of all is that I have not had a hot flush for 2 weeks. After being tortured day and night for months they have suddenly stopped and I don’t have to sleep with the window open or the ceiling fan on full pelt all night. It’s weird, but brilliant – fingers crossed they’ve buggered off for good!

The Fine Line

I always hesitate to write anything on my Mum’s alcoholism. Unless your family member is a raging public drunk, alcoholism is usually a secret. A big, fat, destructive secret and for years the only people to know about my Mum’s drinking were me, my Dad and my best friend. About 3 years ago I started writing about it here on my blog purely because keeping the secret had gotten all too much, and I also told one of my cousins who had noticed Mum’s strange behaviour and thought maybe she’d had a stroke, but other than that no-one knows. Not even her 3 sons. So when I talk about it here it feels like a huge betrayal of the secret.

There is deep shame for the alcoholic in respect to their drinking and my Mum was very upset with me for telling the Consultant last time she was in hospital (which of course I had to do as it affected her health care). Family members who know about the drinking are very aware of the shame, and they carry the shame burden on their shoulders like a ten tonne weight. I particularly feel for my Dad, who has absolutely no-one to talk to about his wife’s behaviour and the stress it places on him. I, on the other hand, am now at the stage where I will tell people if I need to, because I refuse to be manipulated by my Mum’s alcoholism or let the stress of keeping the secret affect my own emotional, physical or mental health. If she choses the behaviour, she also choses the consequences.

My Mum has been an addict one way or another since she was 14 years old. She was addicted to cigarettes, smoking a pack a day since she was a teenager and only giving up 10 years ago when she had to have a lobe of her lung removed due to a tumour. In her late twenties, from what I can gather, she became addicted to benzodiazepines prescribed by her doctor. We didn’t know anything about depression in those days and women who suffered with their “nerves” were given diazepam like it was smarties. My Mum left my Dad at the age of 34 and that’s when the Whiskey drinking started. After a couple of years that settled down, but she had a couple of drinks every day after work – not alcoholism, but definitely a coping mechanism. She’s been mildly depressed for most of my life, and has been on antidepressants for over 2 decades.

I knew from an early age that my Mum was emotionally fragile and I’ve spent my whole life walking on eggshells around her. Having a parent with mental health issues changes who their children are on a fundamental level and I’m sure much of my kindness, empathy and caring nature comes from taking care of my Mum, even if this care wasn’t overt.

The alcoholism started about 10 years ago after her lung surgery – she had to give up smoking, so she took up drinking instead. Looking back, the situation was given a kick start when we employed a cleaner for my parents. She was 24 and got on with my Mum like a house on fire. I now know that the cleaner was a functioning drug addict and alcoholic and she gave my Mum permission to drink. I, on the other hand, did not. So the cleaner became the friend and confident and I became the enemy, which is when my relationship with my Mum broke down. Up until then, my Mum and I had been best friends and it was really tough for me that the cleaner’s weekly visits were excitedly looked forward to and she was given a big hug and a kiss when she walked through the door, whereas I was tolerated and never touched. Having already been rejected by my biological Dad as a child, to now be rejected by my Mum was devastating emotionally and something which, if I were to dwell on it, would be deeply painful.

There are 6 established roles which family members take on in the face of addiction and my Dad has always taken on the role of Enabler/Caretaker. He hates my Mum’s drinking, yet at the same time is the person who goes to the supermarket in secret and buys her booze for her. If he didn’t do that she couldn’t drink because she can’t leave the house on her own. I try not to judge him for the enabling because I don’t walk in his shoes – I get to come home and have a break from my Mum while he does not, and I have no clue what I’d do in his position. Which doesn’t mean to say I don’t occasionally get angry with him over it, but I try not to blame him. He has cognitive issues and learning difficulties, can’t cope with stress and just does whatever he has to for a quiet life.

My Mum uses my Dad as the Scapegoat, taking out all her shame, anger, guilt and frustration on him. It’s incredibly difficult to watch and when it gets bad I do step in and pull her up on it, but they’ve been together for 45 years and I’m not spending what little energy I have trying to fix their marriage – it’s not my place.

I have very much taken on the role of Hero. I’m the person my parents lean on and depend on, regardless of the fact I am ill myself and have no support. I am also the Caretaker but don’t feel I overtly enable my Mum’s behaviour. I do all their shopping but have always refused to buy her alcohol and if she is really drunk and being either abusive or aggressive I leave and refuse to go again until she’s sobered up and can treat me with more respect.

It took about 5 years for me to learn to negotiate my way through my Mum’s alcoholism. Although she has had mild addiction issues all my life, the drinking only became a big problem 10 years ago so it was a new scenario for me. It was a fairly gradual decline into alcoholism too, so it took about 18 months for me to realise that Mum had a serious drink problem and then about another 3 years before I reached the stage where I could no longer cope with her behaviour and the emotional impact the situation was having on me. Luckily I recognized that I needed help and sought counselling from an addiction specialist, which enabled me to take a step back and take stock.

I then had to decide my future relationship with my Mum. If my parents were younger and healthy, I know for a fact I would just have walked away. My life is difficult enough without adding addiction to the mix. However, neither of my parents are well and they are both in their 80s, and I would not have been able to live with myself if I’d just left them to it. I need to be able to sleep at night and for my own peace of mind I needed to know they were safe and cared for. So I took on the role of Carer but……..and here is the important part…………..with boundaries, which are:

  • That I have time to myself each week.
  • That I have 3 holidays a year (which doesn’t mean I go off on holiday as I’m not well enough, but that I have time where I don’t visit and they are left in the full care of other people. In practice this doesn’t work well, but I still aim for it!).
  • That if Mum is abusive to me, I will leave and not come back until she is sober and can treat me with the respect I deserve.
  • That they help themselves to the extent they can. I am their daughter, not their servant.

Under these circumstances I feel I can cope with the situation without it having too detrimental an effect on my mental and physical health. Being a Carer is stressful whatever the situation, but when you add addiction to the mix it’s doubly so. The Mum that I have known my whole life has been replaced by someone I don’t even recognize let alone have a close relationship with, and there is huge grief that alcohol has robbed me of the last years of my Mum’s life.

I am also angry, which I think is natural. Alcoholism is not a disease. Let me make this clear. The “alcohol is a disease” excuse is what alcoholics use to rid themselves of responsibility for their drinking. M.E. is a disease. Ehlers-Danlos Syndrome is a disease. Endometriosis is a disease. I can’t wake up tomorrow morning and decide not to be sick, however much I would love to. My Mum, on the other hand, can wake up tomorrow morning and choose not to drink, albeit she might need a lot of help to do so. Addiction and disease are two separate issues.

Family members caring for an addict tread a fine line between caring for and enabling their loved one. We don’t always get it right, but I’ve learned that when I start feeling exhausted, snappy or upset, or when I’m making sure everything is fine at my parents’ house while leaving my own home a tip, or when I find myself being sucked in to visiting every day leaving no time or energy for my own hobbies or friends or life, then I need to take a step back and re-adjust the balance. My parents have lived their life and I deserve to live mine. They have chosen their own paths, and I have the right to choose my own path.

But it is not easy. Alcoholics can be demanding, very selfish, controlling, needy and manipulative and before you know it your every waking moment is spent thinking about them, worrying about them or helping them. As I am a very caring person by nature I have to be very mindful about getting sucked in to my Mum’s drama. Alcoholics are massively self absorbed and they often have little or no empathy for those around them, so for me it’s been important to try and keep some emotional distance so that I can view the situation more objectively and take back control when Mum tries to wrestle it from me. I’ve had to learn to say “no” which doesn’t come easy for a child with their parent.

For anyone coping with alcoholism in their family here are some things I’ve learned, for what they’re worth:

  • Set boundaries and keep them.
  • Love but don’t enable.
  • Or don’t love – that’s your choice and it’s OK.
  • Take time for yourself – you deserve to have peace and to be happy.
  • Accept you can’t fix the alcoholic.
  • Accept you are not responsible for other people’s choices and behaviour.
  • Be mindful about being sucked in to the drama.
  • Get professional help if you need it.
  • Walk away if that is what’s best for you.
  • Live your own life. I can’t stress how important this is. You deserve love, affection, peace, support, comfort, fun and all the other positives healthy relationships bring. You can never get today back and it should not be robbed by the destructive behaviour of someone else who has clearly stopped caring about you.

For anyone living with an addict I send hugs. Remember, their life is not more important than yours and you deserve to be happy.

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 😕.

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 ☹. 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 🙁.

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

Say What?!

I’m getting frustrated at the reaction of many of the people I know when I tell them I can’t have the vaccine. Note the word CAN’T. I am absolutely not saying I DON’T WANT the vaccine. I’d sell a kidney to be able to have the vaccine, despite the fact that recent research has shown it is only between 4% and 30% effective at reducing infection from Covid, so theoretically you could still catch Covid and although it won’t kill you it could have a devastating impact on pre-existing conditions like M.E. or MCAS (but that’s a conversation for another day!).

The response I’m getting is that there must be a way around the issue. “Have I spoken to my Consultant and what do they say?” (er, and what consultant would that be? I haven’t seen a consultant in nearly a decade). “What exactly would happen if I had the vaccine?” (I don’t know do I, because I don’t have a crystal fucking ball). They are not LISTENING to me when I say that the last vaccine I had gave me meningitis, nearly killed me and put me in bed for a decade. I am not risking that again, pandemic or no pandemic. I have anaphylaxis to Camomile tea and have spent 9 months in bed after catching a cold – my reaction to a jab which stimulates my immune system beyond all reason is anyone’s guess.

I know lots of people with my triad of conditions have had the vaccine without repercussion. But did these people have a catastrophic reaction to a previous vaccine? Because if they didn’t we are not in the same boat. The same storm, but NOT the same boat.

When did we lose the ability to listen to each other? To just accept what the other person is saying without questioning it or trying to fix it? If my situation could be fixed I would have fucking done it by now. I have not been sick and largely housebound for 27 years for the fun of it. I don’t have allergic reactions to virtually every drug I put in my mouth just to be awkward. I don’t know what’s so hard about accepting that my immune system does not function in the same way as most other people’s.

We seem to have a huge problem accepting that everyone has a different experience of the world. There is almost an inference that I am deliberately making my life harder than it needs to be. I’d love some of my friends and relatives to actually spend 24 hours in my shoes and then they’d know just how difficult my life is, how every single day is spent in fear of having a mast cell reaction and just how little I speak/moan about it!

I just want to be heard without being interrogated. Without someone trying to ‘fix’ me, because if my health problems were fixable I am not stupid and I would have FUCKING FIXED THEM MYSELF. It is beyond arrogant to assume that after a 2 minute conversation with someone that you know more about their life and their issues than they do!

We just need to listen more. Properly listen.

Weekly roundup

A friend told me yesterday that her mast cell consultant is just about to publish research on mast cell activation in Long Covid, which mimics M.E. in many ways. As my regular readers know, I’ve long suspected mast cell activation of some form is behind M.E. (see this post) and I know that some clinicians working in the M.E. field in America who have looked for mast cell activation have found it in around 60% of their patients. The fact that mast cells are activated in Long Covid comes as no surprise.

I have not had a period now for 5 months and it is awesome. No more mood swings or crippling endometriosis pain, diarrhoea or smelly tampons. However, nothing in life is free and the price I’m paying for my lack of periods is insomnia. Last night I barely had a wink of sleep. Either I simply couldn’t nod off, or I was deeply asleep when a hot flush exploded inside my body like a bomb and I woke tearing the covers off and dripping in sweat. I’m absolutely knackered.

The pain from my Mum’s broken shoulder is quite good, she is sleeping better and we also finally seem to have found a tablet which is helping with her nausea. After trying all the usual drugs she’s been prescribed haloperidol and although the sick feeling hasn’t totally vanished it’s at least at a bearable level. However, she still says she doesn’t feel hungry and when she does manage food her stomach hurts so consequently she’s still barely eating. I’m not sure what the solution is.

As of 8th March, we were allowed outside for “recreation” so I was hugely looking forward to going out and about with my camera for the first time this year. However, in true Sod’s Law fashion it has piddled down all week and the idea of going out in 50mph gales and horizontal rain wasn’t exactly tempting. So instead I’ve spent most of my spare time this week under the duvet binge watching old episodes of Love Island. My brain now feels a bit like mushy decoupage paper 😆.

Yesterday I received a huge wad of court papers from TalkTalk in respect of my action against them for not providing a fully functioning telephone line for my parents for 7 months last year. I am so tired and overwhelmed I can’t even look at them yet. I don’t know what happens next – I guess the judge will issue a trial date. Something to look forward to then, though how I’m going to fare with my poorly brain and lack of legal knowledge against the solicitors of one of the largest companies in Britain remains to be seen.

Today is Mother’s Day and I am getting a take-away at lunch time from a local cafe (we are still not allowed to eat in restaurants, but they can provide take out) for myself and my parents. Mum won’t eat anything, but at least it gives my Dad a break from cooking. He has been an absolute legend recently. Yes I do a lot for my parents but at least I get to come home and chill – he is there 24/7 and it must be stressful and utterly exhausting looking after my Mum bearing in mind he is 81 years old.

Well lovely people, it’s 8am and I must get up, get some breakfast then take the hound out. It’s over-cast, drizzling and freezing cold and I admit the thought of leaving my warm, snuggly bed isn’t appealing. I am so over winter I can’t even tell you, though the fact there is fresh snow on the fells this weekend is hinting that winter isn’t done quite yet. Yay.

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 😥.

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 😕. 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 😟. 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 😆.

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 😕). 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 £729 asking price, giving me a king sized mattress for £516, 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 £30 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 £30 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 😮. 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 ☺. 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 4½ 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 🙁. 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 😄.

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 😮. 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 🙂.

Until next week lovely friends, stay safe x