New things

Six weeks ago I did something crazy. It had been in my head since before Christmas and I had been spending an age mulling it over too scared to say it out loud. It took until after Christmas for me to even say to anyone what I had been dreaming up.  One day I mentioned to my husband what my idea was, he assured me it wasn't that crazy and that if I didn't try I would never know.

To some this idea won't sound that crazy at all but believe me it sent my anxiety into over drive. My big plan. my crazy idea, wasn't really out there at all. I just wanted to start up a monthly coffee morning for like minded crafting friends who would like to learn new skills, solve a craft problem, get hints and tips etc. I will be honest  through 2019 I was a bit of a hermit, some of it self imposed, some of it well read my post Reflections and you decide. I was going months and I mean months without seeing anyone other than Mr Myasthenia Kid or Dembe. Ok so that is a bit of a half truth there as we were going to dog training but a 5 minute conversation once a week with someone other than my husband is not socialising. Especially when the topic is just Dembe or dogs in general. My mental health was being crushed, although creatively I had never felt so fulfilled as my sewing / embroidery had taken on a new direction. My anxiety was really getting bad around social interactions because I literally just wasn't seeing anyone.

Chronic health conditions impact so much of my life, it limits the time I can spend doing it. I would love to run a small business selling items but my body couldn't cope with the work load that something like an Etsy shop would produce. I can't do craft fayres as I couldn't sit there all day without then being sick and exhausted for weeks after. Crafting is my life it gives me the reason to get up and keep going every morning. Without it I would be very lost. However part of crafting is sharing your triumphs and disasters. Whilst there are various Facebook groups ( some of which are very supportive, others are like a nest of vipers) it isn't the same as actually speaking to a real live human being. I can no longer drive as I lost my driving licence 5 years ago due to my medical conditions. Public transport is too hard going for me. I rely on Mr Myasthenia Kid if I want to go anywhere so attending guild meetings hasn't been easy due to his work schedule. I wanted something that combined my love and appreciation for all crafts and a social atmosphere. So I took the plunge.

I knew the name I wanted for the group - "The Stitchin' Bitches", I also knew due to the size of my house numbers would have to be limited, if anyone wanted to come at all. A friend of mine reached out regarding a crochet issue she was having, we are both self taught and only in the last few months. I casually mentioned in my response that should I start up a group for us to meet and discuss our crochet ( and other crafts) would she be interested. She almost bit my hand off, she would be extremely interested in it and what a good idea. 

Even though I had this positive response I still left it at least a week until I built up the courage to put up a post on my Facebook timeline asking if there were any like minded crafter's like me that wanted to meet up on a monthly basis and do crafts together. Be it crochet, knitting, embroidery, sewing. I had a lot of responses but it was from people in different parts of the country saying that they wished they lived near me as they would be there like a shot. Initially responses from local friends was slow, embarrassingly so. I was starting to think that maybe there wasn't any desire from any of my friends ( other than the first one I spoke with). Determined not to take the lack of response from my first post as the definitive answer I posted several more times. Each time I got responses from people outside the area that I lived , even the friends I have made world wide via various health forums wanted to come. But in the end I had 4 people interested which was a good number - remember I live in a tiny house.

I set up a private Facebook group for us all to be able to post in and then set up a poll so that they could let me know what days suited them best to hold a meeting. I had envisioned when I first embarked on this idea that it would be one hour a month - which for me was fine as it would give me time to recover and give me some social time. We decided Mondays were best and set the date for our very first meeting of The Stitchin' Bitches - they all loved the name by the way! I think we sort of sound like a Country and Western group LOL!

Initially it all seemed fine until my anxiety kicked in the day before our first meeting on Monday 10th February. I was just terrified that the meeting would be a flop, that people wouldn't speak to each other or that after 30 minutes people would be racing to get out the door. I was so anxious I barely got more than 2 hours sleep, I tossed and turned all night. This would be me hosting an event ( thankfully all my friends know I am poorly and will pitch in with making drinks etc if needed)  without my safety blanket of Mr Myasthenia Kid. Also some of the people attending I hadn't actually seen since I left work in 2008. For me it was a huge gamble. I am always really anxious when people come to the house anyway, I worry that they think it is dirty or uncared for etc. Its hard to keep on top of stuff when you aren't well and all the DIY stuff falls on one partner. So I know there are some places crying out to be redecorated etc. I was also worried about people judging me, on the outside I don't look sick but every day is a battle of some sorts. I worry that people think I am taking the piss because no one ever see's me when I am really poorly.

Monday 10th February seemed to come around so quickly. By the time 11am arrived I was pretty knackered just from the sheer anxiety creating this "event" had caused. I really shouldn't have worried. I also wasn't the only one who had been anxious, a friend confided in me on leaving she had been terrified to attend. As for thinking they would all be racing for the door at 11.30am nothing could have been further from the truth. It was 13.30 that the last person left and the first person had only gone around 15 minutes before that. I had been concerned due to the fact that we all had one work place in common that we would end up discussing that but again nothing could have been further from the truth. It was barely mentioned and that was only as people left. It was just so lovely to have a few hours with people whose eyes didn't glaze over when crafts were mentioned. I know I can get very passionate about my projects, so it was nice to answer peoples questions about the techniques I had used etc. It was equally nice to see what my friends had been up to. For all of us it was so uplifting to get out of the house and socialise - obviously I didnt go far!

The really nice thing was that as the meeting / gathering was drawing to a close one of the lady's said "Rach, any chance we can do this once a fortnight? I don't think once a week is enough". Everyone else was in agreement also. I said immediately that no one would "have" to come to every session especially if they felt fortnightly was too much, that I was happy for people to dip in and out as needed. But the buzz the morning had created was so great that we set up the next few weeks worth of meetings. I was so proud of myself and what our little group had achieved. I posted on my Instagram account about it and now several other people dotted around the country have decided that they are going to do the same thing. Which is really lovely as it is such a boost for your mental health and to stop the isolation that is all too common in the world.

Today (Monday 24th March) we held the second meeting and today we had the grand total of 7 people here (including me). Dembe was like a dog with two tails, with all the love and fuss he got from everyone. Today two members learned how to start to crochet - slip knot, chain stitches and then double crochet ( UK ). Another lady had a refresher on crochet and learned how to do a Granny Square for the first time. In the corner a lady was being taught to knit. Mr Myasthenia Kid is on holiday this week from work and made himself scarce for a bit having a wander around the town. However he said the buzz and positivity he got from the room when he came home was amazing. He said he was so proud of me for being so brave to try and do something to end my own social isolation. He did make us all laugh as when he walked in he said "good god is this the budget version of the Playboy mansion". Considering our age ranges were from 21 to 70's it was hilarious. 

We were also spoiled by a new member who brought homemade scones, jam and cream for us to have as a crafting snack! And bloody gorgeous they were too. I had decided yesterday to make everyone little paper tissue holders as a way of saying thank you for coming and making it such a success. 

I can't lie after every meeting I have been utterly exhausted. If I knew that it wouldn't impact my nights sleep I would go for a nap in the afternoon. Mondays after are written off with me having a lazy restful afternoon on the sofa but mentally I feel so uplifted and happy. I am so glad that I pushed myself to do something totally outside my comfort zone and I hope I inspire others to take that chance and do new things.

****

On Thursday 20th February, I had the worst migraine I have ever had in my life. It was so bad that I am actually suffering from amnesia caused by it. I have "lost" most of Wednesday 19th, the majority of Thursday 20th, Friday 21st quite a bit is unrecoverable as is Saturday 22nd.  It is only from yesterday on-wards that I can recall anything that happened during the day with any clarity.  I won't lie this has scared the shit out of me. Which is why I haven't done a huge detailed blog post because basically I don't know what happened to last week. I have a gp appointment booked because I need to know that this was just a horrific migraine and that I can be referred to see a headache specialist or if it was something like a TIA that can also be looked into. Having Google at our finger tips can be a curse and a blessing but as I can't account for much of last week and this has never happened to me before with a migraine I can't just ignore what has happened. Anyone who knows me also knows that I don't run to the doctors every 5 minutes so it has really shit me up.

As soon as I know you will know.

Life Laundry - moving on.

Me and Travis

I don't know what it is about October but it seems to be a catalyst for me to have a look at my life and change things. Remove those things that are causing me unhappiness / hurt. To assert myself and decide that those who do not treat me with respect will no longer have that option. I have no idea what makes me so brave in October, maybe it is because it is my birthday the following month? Is it because I don't want another year of feeling unhappy, unworthy, stressed out by people or things or events? Maybe I just don't want another birthday where I compromise and don't put myself and my happiness first?  October as I have written about before is a month of sadness for me, even more so this year as it is full of anniversaries now of dogs and people I have lost. 

First it is my Grans birthday, I miss her more than I imagined I would. That may sound strange but for much of my childhood she was someone I spoke to on the phone and perhaps saw twice a year as she lived at the other end of the country. I stupidly believed that life would continue on as normal when the time came but I have to admit there have been so many occasions that I have gone to ring her and realised that she is no longer here. She would have loved Dembe, she loved dogs and told me on more than one occasion that if she had owned Buster ( her dog ) first she would never have had children. I miss her sense of humour and Jamie's face when he tried to speak to her on the phone but struggled due to her Aberdonian accent.

The following day it would have been the babies - Frankie's and Willow's 13th birthday. I wasn't really conscious that day due to the hemiplegic migraine I came down with. I knew it was coming and I was feeling sad so I do wonder if both those anniversaries triggered or played a part in triggering the migraine. It wasn't something either of us was talking about it was the elephant in the room. Plus that birthday is shared by our niece who was celebrating her 30th birthday which left us feeling ancient. She was just 8 years old when I met Jamie. 

Today 16th October Dembe celebrates his 11 month birthday. He has celebrated in style this morning by having his very first swim in a pond on the common. He has been really funny about water outside of the home, he leaps over or avoids puddles at all costs. He would barely get his feet wet by paddling in ponds when very small and ran away from the sea when we took him down the beach.  So to hear he has had a swim is really funny. Unfortunately Jay thought he had videoed the event on his phone but when he came back to show me, he had taken about 1 seconds worth of footage. It's not the end of the world Dembe will probably now be a regular swimmer and Jay will take better footage. 

I'm glad that it is only this year that we count the months of Dembe's age. As our first dog Travis passed away on 17th October 2006, 13 years ago and in all those years there is not a day that goes by when he doesn't pop into my head. Of course I know that the chances are that he would have passed away by now but to lose a dog before his 3rd birthday is a unique kind of hurt. When you get a puppy you expect to have at least 10 good years with them. Believe me those ten years fly by. If you get longer, which we have been incredibly lucky to do with Mollie ( Travis' sister), Frankie and Willow, (Mollies children), the loss isn't so hard to bear. Its tough believe me especially losing Frankie and Mollie within 7 days of each other. I have said it before and I shall say it again, I thought I would drop dead from the pain of it all. However the pain you feel when they don't reach that milestone of ten years is a pain like no other. I don't think I will ever be able to say that the pain has truly gone.

October 25th marks Travis' birthday, we first saw him when he was three days old. At that point we had no idea which pup would be our boy but his name was already chosen and we were so excited already that we were having problems sleeping. It seemed such a grown up thing to be doing, even though we were both 29! Three days after his birth on a Tuesday we moved into our home and have been here ever since. I can't believe it has been 16 years already, it still feels like it was just a few years ago. But the little boy two doors down is now coming up for 21 and works and the same place hubby does.

There doesn't seem to be a week in October that doesn't hold a significant anniversary. For years I always used to hate October, I would start to feel down the minute the clock struck midnight on October 1st. I would just feel sadder and sadder until the 17th and then I would spend that day blubbering on and off, trying to deal with the overwhelming grief that I felt over losing Travis. Some years are easier than others. Last year it was a terrible day, I sat on the sofa all day crying being comforted by Frankie not realising how little time I had left with him. This year it doesn't feel so bad. Probably because we have our little ray of sunshine Dembe to keep us on our toes. He is such a happy dog it is pretty impossible to stay sad for more than a few moments as he will do something that will either melt your heart or make you dissolve into fits of laughter. I also think after going through that double loss at the start of the year all other grief / pain pales into insignificance.

Whilst October has for many years been a sad month for me, it also has become a significant milestone for my friendships. I am an extremely loyal friend who will fight to the death for you. I am the place you run to when you need help or comfort. Wrongly I put you before me and sometimes individuals take advantage of this and abuse my friendship. I don't deliberately ever plan to sit and take stock of my friendships at this point in the year. It seems to be something that happens. I think it is because with my birthday the following month I think to myself "would I want to spend my birthday with this person?" Would I feel comfortable accepting a gift from them knowing how I feel about them?" I normally just look at the people I have been moaning to Mr Myasthenia Kid. He will tell me quite honestly if this is a conversation we have had many times before. He will ask me "if next year will we be having the same discussion?" Some years I do nothing, I soldier on determined to make the best of things as due to my health conditions friends who come and see me are in short supply. I do have wonderful friends on Instagram and Facebook but sometimes you need to actually speak to someone, share physical space with them. If it has got to the point where I don't want to spend time with a person and would rather spend days on end alone then I know it is time to move on. Be it a friendship of two years or twenty. I have no desire to flog a dead horse. I won't beg, I won't demand, I just leave and move on with my life. I have done it before, I will probably do it many times.

I don't expect much from friendship, I certainly don't expect to be the centre of your universe, we all have our own lives and all the demands placed on them. I do expect to be more than an afterthought. I do expect manners, loyalty and respect. I also like communication, conversation that is two way. I will hold my hand up and admit I can be crap at remembering to message people but I do make an effort for those who I consider in my  close circle. I will always be there for my friends like they are for me. 

To be fair it's not just my friendships that have come under scrutiny in this life laundry. I have done a lot of sorting out of clothes, belongings etc Donating a lot to charity as both hubby and I are on a diet and so much of our clothing has become tent like. I have been taking a look at each room and trying to reduce the clutter. It seems again to be a pattern of mine in October! probably because I want the house looking nice for our birthdays or Christmas.

As a friend told me its Life Laundry, as in it's a spring clean of relationships. You get rid of the crap and the unnecessary. As she said "it's tough but necessary" and she is right. You shouldn't cling to things that no longer make you happy.  

I already feel so much happier and uncluttered. Even though there is a huge anniversary for me tomorrow I am not facing it with the usual dread.  It is time to move on.

Frankie

Mollie and Willow

Gran & me

Empathy

When I wrote last week's blog post Rainbow Bridge  I never expected in a million years the response that it received. It wasn't just me hubby had people coming up to him in work, telling him that they couldn't read it without shedding a tear or that it said what they felt but had never been able to express it. I had followers on Instagram contacting me about their recent losses and long ago losses too. On Facebook it was the same, with many people contacting me or leaving a comment. . It was emotionally hard as I am very empathetic, so when people start to get tearful when they are talking to me, it makes me cry too. But when I wrote the post I was half expecting it to stir up a lot of emotions because I had been in such a mess as I wrote it. I have to be honest I never did a final check on the post to look for errors, mainly because I found it so upsetting to read, it was real and raw. I haven't even gone back to look at it now to refresh my memory before writing this one. I just can't do it, I have already been in tears today twice over the dogs. It is always just bubbling away under the surface for me at the moment, although to look at me or to see any of my social media posts you would never know.

I am so touched that something I have written has moved so many people. I thank each and everyone of you who commented or messaged me. It was very hard last Thursday as I had no idea how it would be received. I had no clue if people would think I was wallowing, being self indulgent or a drama queen. That people would think that I should pull myself together and get on with the rest of my life. I promise you I am not self indulgent, wallowing or being a drama queen. I just write about life and my experiences. I try to give a voice to those feelings that we push down and don't let anyone else see. I take a chance that people won't reject me or ridicule me because I try to talk about things that many would rather brush under the carpet. Although there have been several articles regarding the death of a pet in National newspapers it is still treated with some degree of disbelief by those who have never had an animal / pet in their lives. 

The whole point of my post was for you - whoever you are, know that it is ok to feel whatever you are feeling, to express your grief ( and it is your's and no one else's) anyway that you like. That these feelings are totally normal. You are not weird, you aren't wallowing in your grief, you aren't an attention seeker and you are certainly not being a drama queen. You are hurting and it will take time to process all that emotion. Hell I am only 8 months on and there are days where I can barely keep it together. Days where all I do is cry. Days when I feel guilty when I know rationally I have absolutely nothing to feel guilty about. I just wanted you to know you aren't going mad, I honestly thought at times I was losing it. All of those feelings, even the uncontrollable rage that even surprises you when you roar, is totally normal. It is the beast called grief and it doesn't have to be something that you go through alone.

As I touched on in my blog post even when you have suffered from a significant bereavement such as a partner / child / sibling / parent / friend, people who haven't been through that kind of grief can't begin to imagine the enormity of the feelings of loss and pain. They may see you red faced, tear stained and see your grief but that is soon forgotten because it has no direct impact on their lives. The next time they see you, taking the kids to school, going to work, getting the shopping - all things you have to do despite the pain and grief they assume you are "better". They don't understand that grief goes on forever. They seem to think that grief has a timeline and by a certain amount of time say 6-12 months maybe sooner if they are real dicks, you "should" be "over" it. How do you explain that there is no getting over it? You are just getting through each day the best you can. There will be good days, bad days and the worst kind of days.  Life will probably never be the same again. But there will never be or has there ever been for anyone who is grieving a time when they are over it. Getting Over It has to be the most grotesque phrase ever. Followed by Time is a great healer. There is no healing from grief, you carry that pain forever.

I had people contacting me about dogs they had lost thirty years ago during their childhood that they still mourned for.  Others told me about their recent losses that they just couldn't process or that in the proceeding days before my blog post it had hit them, after thinking that they could keep going and carry on as normal. I was quite honest when I spoke to them and told them Jay and I have very little memory of January and February this year.

 We know we got Dembe, we know he was tiny but ask us to recall anything significant like where we took him on his first walk. What the date of his first walk was, his first bark, his first growl all the stuff we would normally remember and we draw a blank. It's not because we didn't care about it, purely our brains were overloaded processing what had happened when we lost Frankie and Mollie within 7 days of each other. I am so glad that I started the Dembe Diaries blog and his diary that I base the blog on, so that in years to come I can look back and see all those things in black and white that my brain was unable to absorb at the time.

 I do remember Jay barely spoke in the first 4-5 days after it happened. It was quite stressful as I went into list mode, trying to control everything because my anxiety spiked. His anxiety spiked because I was making so many demands on him all the time and obviously he needed to have some control in his life too. It was very difficult trying to get him motivated to help me sort the house out ready for Dembe's arrival. Especially as we couldn't stand being in the house as it was just full of reminders of how empty it was. We did cry together and we did talk about our babies, all of our babies. But the pain and grief was hard because although it has happened to both of you (or all of you) it is also an individual thing that no one can make better or take away from you. People grieve in different ways. Just because Jay wasn't breaking down in tears every 5 minutes like I was didn't mean he wasn't hurting or struggling to cope. You only had to take a look at him, ashen faced, tired and so very quiet, grief and pain was written all over him. For a few days I was worried that he was going to drop down dead from a heart attack or stroke he looked so ill.  

Grief is weird one minute you can feel like you are doing ok and the next minute it feels like the world is imploding. There is no rhyme or reason to it, you are carried on its current and it takes you wherever it pleases. There is no control of it, it controls you initially, even denying you sleep when it wants to. Both Jay and I suffered from terrible insomnia in the 7 days after Mollie and Frankies passing. We would find ourselves downstairs in the middle of the night watching crap on the TV whilst eating chocolate biscuits and drinking sugary tea in the hope we would just pass out from a sugar overdose. I remember one day within about 20 minutes of each other we both left the electric shower on, when we left the bathroom, returning to it a few minutes later, neither of us could work out why we had left it running. We had no recollection of leaving the bathroom.  Life really was being lived on autopilot, all we could do was keep putting one foot in front of the other and get through another day.


I want to tell you that things do get better, the grief becomes less overwhelming.  I feel like I am finally starting to live life again instead of just simply going through the motions. I am not saying that in 8 months you will also be feeling better, it could be less time it could be substantially more time. But there will come a time when you let a breathe out and know that you are starting to be you again.


Up until about a week ago the last time I listened to music and enjoyed it was 29th December 2018. That was the day that Frankie passed away and I had been listening to my Sinead O'connor LP. I didn't play any music for a couple of weeks. After that time had passed, I tried but I found the noise too much and overwhelming. I had no emotional connection to the music. I would rather be in silence or have the TV on low in the background.  For the last two weeks I have played music non-stop. I have sung at the top of my voice and quite possibly scared the neighbours. I have found the joy in music again. I haven't played my Sinead O'Connor LP, I think that one will take some time. I may not play it again for several years, I'm not setting myself a target, I will let it happen, I won't force it. One day I will sing something from the album and it will be like an ear worm that won't die until I play it. At the moment anything from that LP makes me sad.

We have also started planning things for the future. We have booked  a short break in the UK next year and we will be taking Dembe with us. It is very exciting. This will be the first time since 2006 that Jay and I have had any sort of holiday. It is only 3 nights away but it will do us all some good just to get out of the house and away from the day to day. I am nervous as hell as I have become a real homebody since becoming ill. Other than stays in hospital I haven't been away from the house in 13 years. It is hilarious to me that I am getting a bit anxious thinking about it when Jay and I have travelled to Sri Lanka, USA (Florida), Antigua, Paris, Menorca and various places all over the UK for weddings / christenings. I know that we can do it, it is just my world has been so very small over the last 13 odd years.

So please be kind to yourself, wherever you are in your journey with grief. Everyone does grief differently, there is no one size fits all. What works for you may not work for anyone else.  Remember living life does not mean that you have forgotten those who are no longer with us. At some point things will get easier, you will reach a new normal. It is not a journey you have to do alone. If more of us start talking about grief and how it affects us we will educate those who have never experienced it and maybe create a little more empathy. The world could really do with more empathy at the moment.

Solitary confinement

I’m used to my own company, I am in fact quite a solitary character. I don't

need to be surrounded by other people, as I can entertain myself. However

sometimes the loneliness of chronic illness really gets to me. I am having

a wobble.

Mr Myasthenia Kid had two weeks off work (as annual holiday) in August,

it’s the longest he’s taken as holiday in years. Normally he takes a week

here and there throughout the year. Always holding some back in reserve

in case he needs to take time off to look after me or take me to medical

appointments. Usually by the end of his weeks holiday I am happy to send

him back to work, as I have my own routine and ways I like to get stuff

done. This time however I am finding hard to adjust to not having him

home with me. We had a lovely two weeks together, laughing, talking

and generally just being together and now the house just seems

so empty and quiet. It’s been quite hard to g back to it just being me for long

stretches at a time.

It is really hard to explain how empty the house seems, it’s not like he takes

up lots of room or that he makes loads of noise. It’s just I got very used to

his presence and having someone to talk to. When you are chronically

sick and virtually housebound your world gets very small. You only see the

people who can be bothered to make the time to see you. Being below

retirement age all of my friends are working and have families of their own,

so I am very grateful for the time I do get to spend with them . With the

pace of life these days, it’s very easy to be forgotten about, out of sight

out of mind. I found that back in 2008 when I left work, that all these

people who I had known for 12 years who I believed were my friends, just

disappeared. They think a quick comment on your facebook page is a get out

of jail free card, it doesn’t replace seeing someone in the flesh and having a

conversation.

Most of my friendships are now online and I have made some truly wonderful

friends. Particularly on Instagram amongst the crafting / sewing / creative

community. I am lucky to have got sick in an age where to talk to someone

I just have to open up my computer but it doesn’t replace the physical presence

of another human being. I am grateful for the online friends I have but I would

imagine they would agree that proper physical contact with other human beings

trumps any other contact with the outside world.

I have always been quite a solitary character, my own company isn’t something

that has ever daunted me. In fact there are days where I cherish the time I

spend alone. I like being able to step back from the outside world but I also

like to spend time in it or as close as I can. I like a balance of both but due to

my health being so utterly rotten this year, I have barely seen anyone since

the end of June. I have literally gone weeks and the only person I have

spoken to is Jamie. Can any of you who aren’t chronically sick imagine

what that is like, that the only contact you have with the outside world is

with one person? It’s no ones fault, this isn’t a dig at any of my friends

as it has been me doing the cancelling due to not being well enough. Is

it any wonder now that after having two weeks of company I am finding

going back to being alone so very difficult? I am grateful that we have the

dogs but their conversational skills are very limited.

It’s hard to explain but my heart hurts with the loneliness and the missing

Jay. I know he’s only 7 minutes up the road but the house is so quiet it is

deafening.

Every year around Christmas time there is always a campaign about loneliness

and the elderly. Every year I want to scream at the TV it’s not just the elderly

who are lonely in this country. There are hundreds of thousands if not millions

of people whose lives are blighted by illness who see no one for weeks on

end other than their caregivers or partners. It is assumed that if you are

aged between 18-67 that you are in work but there are many of us who can’t

work, who are housebound who are crying out for some company yet we are

the forgotten ones. I don’t know if it is because people don’t understand

chronic illness and can’t get their heads around the fact that there are working

age people, who through no fault of their own do not have the social outlet of

work and are just forgotten. It’s like we don’t exist.

I am extremely lucky I have friends who do come and visit me. I really

appreciate those visits and I hate it when I have to cancel due to my health

deciding to have a hissy fit. It takes a lot for me to cancel because I don’t

know when they will be able to visit again. There are lots of people in my position

who never see anyone. I know I am lucky, I am just sad this week as I am finding

it so hard to adjust to Jamie being back at work.

I know given a few more days I will have got myself back into a routine and I

will be used to being on my own again. I thank my lucky stars for my cyber

friends who are so supportive and caring. Even though I am shit at messaging

people because I am always in my own little bubble. I have an issue where I

think of someone, say to myself “oh I must message them” and two weeks

later I realise I haven't. I’m currently struggling with what day of the week it is.

Not because there has been a bank holiday it’s purely that I have no clue.

To give you an example of how bad it is at the moment, I had no clue today

was Thursday and was quite surprised when I started to get notifications on

my blogs Facebook page. It was only when I looked I realised that my blog

post for this week had been published. I tend to write them in advance and

schedule them in to be published automatically. This morning I had no idea

that it was Thursday. I do however know who the prime minister is and what

year I was born! Just in case anyone is concerned about my mental status.

It’s just the days are currently blurring into one.

I also know that the way I am feeling now is probably a reaction to all the

stress I have been under lately. My mum has had some pretty major surgery

that was needed out of the blue. Adrenaline has carried me through for weeks.

Now things are starting to calm down, I have the time to spend analysing my

feelings because during that time period it was just getting through that day

that mattered. It was a frightening / stressful time. In a year of horribly

stressful and sad events. I know I just need to get back into a routine and

allow myself the period of adjustment instead of being so hard on myself that

I am struggling to adapt.

This probably  seems quite a depressing read, I’m sorry. I have just really been

surprised at the depth of feeling that Jays return to work has caused me. I don’t

think in the nearly 22 years we have been together that I have ever missed him

so much. Silly really as every night he is home, every morning he is here.

Just at the moment being in the house alone seems a little like solitary

confinement.

P.s Its over a week later and I am back into my old routine.
I am enjoying the time I have to myself and have been really productive
on the sewing front.  I have also had a visit from some friends which was
really nice. Obviously I still miss Jay during the day but it's not like the deep
ache in my heart I had before. I  am much happier now that I have re-adjusted
to the time spent alone.

Odd Ones

A few weeks ago an incident happened that has happened many times before to me on social media, I was hit on by a complete stranger. They seem to all go to the same school of charm, as the same phrase is always used. I was told yet again “Btw (by the way) your profile photo is really sexy”. This always makes me roar with laughter as my profile photo is usually one of my dogs. I hate having my photograph taken and I rarely post photos of myself unless it’s of me with ptosis The men that use this phrase clearly don’t actually look at the profile picture they are sending this crap out to or they really do need glasses!

I suppose Frankie could look sexy if you were into that kind of thing LOL!

My husband had no idea how often this happens to me, I simply hadn’t bothered to tell him. I am probably like most women, so used to this crap that it really doesn’t bother me anymore. I might find it creepy some days but I usually send the person back quite a rude response and immediately block them so I can have no further dialogue with them. Due to my position as an admin on a Facebook group, I have to set my messages so that I can receive them from anyone. Facebook naturally filters them for me into people I am friends with, those messages go straight into my inbox and people I don’t know come up as message requests. Thankfully I can preview these without the other person knowing, so that should I wish to I can decline them.

However a few weeks ago I had the same issue with “your profile picture is very sexy” but this time it wasn’t a stranger, out of the blue. No this was during a serious conversation I was having with an admin from another group. I had contacted this admin as a favour as I had joined his group only to see that there was an ex member of the group I admin in there. This member had been removed due to his aggressive and confrontational / rude behaviour and I could see that he was up to his old tricks in this group. As a favour I thought I would give this admin the heads up. Oh how I wish I hadn’t, the conversation started up normally enough and then out of nowhere came the creepy statement. All respect I had for this gentleman left me right there, why would you do that ? and why on earth would you think that was ok?

Why is it that men seem to think that the internet is just another way to be pervy to women? What did this man, let’s call him Chris think I was going to say after he told me my profile picture was very sexy? “Oh thank you kind sir, let’s run away together?” At the time I just said “erm thanks the photo is of my dog's nose” I exited the conversation quickly after that and I am happy to say he hasn’t contacted me again.

Now if he did this to me and he barely knows me, literally we are in the same health issue group, what is he doing to women in the group he helps run? Women who he knows are vulnerable, to me that is the behaviour of a predator. Unfortunately it’s not the first time I have heard about a male admin or husband's of an admin taking advantage of their position to gain sexual satisfaction. It really brings it home to you that you should never blindly trust someone on the internet, I am always quite cautious but even I have had occasions where I have let my guard down and been punished for it. However it is usually females that take advantage of me, by monopolizing my time, asking highly personal questions and then when I tell them that I won’t answer that question I have had them get extremely nasty with me or make out that I am taking offence for no reason.

The male pervs I can deal with, as I say they normally get a special message back from me. It’s the females I find incredibly difficult to deal with, sometimes it can take me years to  stand up to them. I never divulge things I don’t want to, I won’t be bullied into that. I seem to attract the ones who are emotional vampires, who are in competition with me as to who really is the sickest them or me.  Anyone who knows me knows that I really don’t fucking care who is the sickest it’s not a game I play. They are the ones that only ever talk about themselves and when you look back at the messages you have from them you see that they rarely ever ask you how you are doing.

I write a blog, I give information away freely it’s something I chose to do.I also control the information that I share. I also understand that people will contact me as part of that. 99 times out of 100 I have no problem at all with the people who contact me and I am more than happy to help whenever I can. The downside is even though my blog audience is pretty small by the grand scheme of things and my page only has a hundred or so followers on Facebook. I do seem to attract more than my fair share of weirdos. I have been asked for money, I have been asked if I want to join an investment schemes but the ones that really get my goat are the ones that steal my time. They are the ones that message me incessantly for days on end, that claim to be big fans of my blog but the questions they ask prove time and time again they’ve never read it. They are also the ones that claim to know all about my illnesses, yet the things they say prove they don’t. I try so hard to be polite and kind to  everyone I encounter online but some people think that gives them the green light to walk all over me or to ask deeply personal questions. When I point out that I won’t answer the question and why, I am belittled through mocking apologies. Yet when I stand up for myself and tell these people to sling their hooks I am the one left feeling bad about it. I just can’t win.

Some of these encounters make me want to just shut down all my social media accounts and run away. But then I think to myself why should I be the one to suffer? All I have ever done with my blog is try to tell my story and hopefully help others who maybe at a different stage of the journey. The majority of my online encounters are lovely it’s just the odd one or two that leave me with a bad taste in my mouth. It’s the odd ones with a problem not me!

2015 was not last year

We are now six months into 2017 but my brain is still failing to catch up after last year. I am still catching myself thinking that 2015 was last year or writing the date as 2016. It’s almost as if 2016 didn’t happen at all and throughout all the years of chronic illness this has never happened to me before.

Last year holds very few memories for me, much of it is a vague blur. When you look at what occurred last year it's hardly a surprise. From the start of the year I started to experience what I believed to be migraines several times a week. Over the course of three months they became daily and at the end of March 2016 I collapsed in the shower due to the pain. It was immediately diagnosed (correctly) by my gp during a home visit to be a low pressure headache caused by a CSF leak. My gp spoke to my PoTs / EDS consultant who advised increasing my salt tablets (salt can increase CSF production). I spent much of April in bed, three weeks after I collapsed I was referred to a neurologist who specialised in CSF Leaks. First hurdle jumped through or so I thought.

Despite my referral being marked as urgent, my referral was refused. This is not uncommon these days as many hospitals now employ admin staff (not medically trained staff) to sift through referral requests to see which ones they can deny and which ones they will approve. At the hospital the consultant was based, insider knowledge from an anonymous source informed me 60% of referrals to neurology were being denied for spurious reasons. When I still hadn’t heard anything back from the hospital by mid May (and now in daily agony) my referral was submitted again. By the end of the week I had an appointment for 22nd June, the day before the EU referendum vote hence why I can never forget date, as it was discussed in my appointment. Now cynical me would say what a devious strategy for hospitals to keep their waiting lists down by refusing to accept 60% of referrals. But with the UK at the polls today for the General Election, you’ve probably been all politicked out, I know I won’t be sleeping tonight whilst I wait for the results to come in.

A week after my hospital appointment in June I was admitted to hospital for various tests and the hope that I would get an epidural blood patch done. Those of you who regularly follow my blog will know that I didn't get an EBP done but instead started monthly caffeine infusions and occipital nerve block injections. With the introduction of the infusions and injections things did improve a little but I was still pretty much incapacitated every day to varying degrees.

On the worst days I would be in bed for 20-24 hours, unable to lift my head up off the pillow whilst violently throwing up. My bedside bin (lined) became an impromptu sick bucket and I became an expert at throwing up whilst lying on my side. My world really began to shrink, much of the time I couldn’t watch TV or use a computer / phone as the light emitted was too bright even with sunglasses on. I ended up listening to audiobooks or the radio to pass the time. The back of my head and neck were permanently red from lying on hot water bottles. Days, weeks and months merged into one, something I am not surprised about as this is the worst medical condition I have had to deal with.

I look back now and I am surprised that I got through this at all. I was lucky as I had the support of my husband, parents and friends. Someone without that support network would have really struggled. When I was able I could also get support from a Facebook group for those who have a CSF Leak, they helped me in so many ways. I now realise that I have probably been leaking on and off since I had a lumbar puncture in 2009. Although it’s not completely gone away, I still have days where by 2-3pm I have a headache start that will only go away if I lie down, I have quality of life back. Lying in a darkened room completely alone for much of the time is no way to live. I have to be honest I don’t know how I would have coped if the pain hadn’t suddenly dramatically reduced just before Christmas last year. You don’t realise how much you have even when chronically sick before, until it’s gone. It really shocked me how quickly life as I had known it had been taken away.

Even though I know 2016 happened and have snapshot memories of things that happened, it does feel like life completely passed me by. It is a really bizarre situation. Obviously it’s quite normal at the start of the year to think the wrong year was last year, for example in January 2017 you were still probably thinking 2015 was last year (or maybe that’s just me?) However it’s June now and I am still struggling to accept that 2016 has been and gone, that 2015 wasn’t last year its two years ago now. It a really hard thing to describe unless you’ve been through a similar situation.

I realised just how caught up I was in still thinking that 2015 was last year when I had to correct myself when speaking to my hairdresser this week - again something I rarely had done last year was my hair! I explained that I was caught up in this brain trap due to losing much of last year to being so ill and she totally got it. Some people I have spoken to about it don’t or can’t understand how you can lose a year but realistically it must happen to many people for a variety of reasons. 2017 just seems so alien to me it takes a conscious effort to remind myself it is this year. One mantra I am repeating constantly is 2015 was not last year. I have six months left to recognise this year is 2017, let’s hope it’s sorted by 2018!