Weighing up the cost

Well since I have not dne a blog for a bit I figured I shoud get my backside ito gear and do one. I’m having a flare up at the min so please excuse spelling, wrong words, punctuation etc.

Well on the bank holiday weekend at the end of May I went to Big Church Day Out which is a weekend Christian music festival in West Sussex I the grounds of the beautiful Wiston House. I have gon the last fw years and absolutely love it. My friend comes with me as my carer and we stay at a local B+B that has a disabled access room. I know that going will make me ill for about a month afterward but I love it and weigh it up and dcide that it is worth the price I will have to pay.

I was an amazing weekend with brilliant artists such as Third day, Rend Collective, News Boys, Worship central, matt Redman and loads more. The highlight for me is always the last acts of the days whre it is a big worship time led this year by Worship Central and Matt Redman espectively. It’s an amazing time an dthey light a massive cross of fire up on the hill and they will tell the gospel in a clear way and over the weekend, undreds gave their lives to the Lord or cam back toGod fter goingaway. I cry every year, it is just wonderful to see.

There are 3 stages, the main stage, the UCB stage and the tea tent which was Tearfund this year. We wander down on the Sunday lunch time and have a cream tea and listen to the usually more chilled out tea tent stage. Then we go and have a look in the kids area where there are farm animals that you can go and stroke. I love animals so I have to go and see them! There really is something for every age group and it is such an amazing festival an di just love it!

The B+B is in a little village called Staining an dis a 5 monute drive away so is perect. They know I can’t get up for reakfast so my friend goes and has hers and orders mine and they bring it to my room for me which is really nice of them. Their full English is lovely but their eggs benedict are amazing!

The weekend before had been a busy one as it was my birthday on the Sunday. I had asked if people could come and do some gardening for me on the Saturday and for friends to pop over and have a cuppa during the day so I had a couple of blokes come and do gardening. My friend Andy came and cut back all the bramles and sorted out my logs and dis my nature wildlife log pile for me and got rid of the chopped ack bushed an dthen my friend Ransome came and did some digging for me to make the sand pit into a pond for frogs and other wildlife and made a flower bed next to it. My friend Tony came and helped me tidy up the patio area and I had friends popping in for drinks and cakes throughout the day. On the Sunday I had a BBQ with a few friends round and it was such a lovely chilled out afternoon and then went to church in the evening. My lovely friend George made me a gorgeous birthday cake tat was covered in edible butterfies. My BBQ is really cool, it has the round base which is a fire pit an dthen it has a teipod over it with the grill on a chain soyou can adjust the height and so the temperature. When I gotback from church the coals were still warm and so I took away the tripod and put on some logs and sat out in the garden drinking wine and eating toasted marshmallows and just relaxing by the fire. I really enjoyed my birthday weekend, was really nice.

The 5 days between the birthday weekend and BCDO weekend I just rested, rested and did a bit more rsting. I knew that the few weeks after would be really bad and so that is why I made the title as it is because when you have chronic illnesses like M.E you have to weigh up every little thing and decide if you are willing to pay the ptice for it. These were big things ut even things like having a shower or getting dressed or chatting on the phone have to be weighed up against how I am at the time and what the cost will be. Life is a constant juggling act when you are ill. I would recommend people watch the spoon theory at the following link to youtube. http://www.youtube.com/watch?v=jn5IBsm49Rk

The day I went away, I had a local charity come and visit me to see if they can help me with the cost of getting m dishwasher plumbed in and getting my scooter fixed. I am just waiting to hearback from them now about wether tey will do it or not. I am applying to some charities for an electric wheelchair and to one about making my garden more accessable and easier for me to garden and another about getting a new bed and mattress as mine is broken and another to see if they will help me with a fridge freezer. I am applying to the social fund for money to uy flooring so am really hoping that I will get enough otherwise it will be back to asking more charities for help. I hate asking for stuff but I am on benefits and I have no option but to ask for help. I just had to get over my pride and realise I can’t do stuff on my own. I am also waiting for an assessment about care. My new OT is really nice and he has put in for the assessment. Apparently he spoke to my oldOT and she wanted me to try and cope on my own in my new place for longer. Yes lie is easier now am in a place where I can use my wheelchair instead o crutches and falling all the time but I still need help with things like washing and drying my hair, getting dressed, going out, prepping food, housework, etc etc. Living here was never gonna help with those things so I was a little upset but my new OT has put in for the assessment anyway thank goodness. I don’t want a lot, I’m not expecting full time care or anything, I just need a bit of hel an I kow of people who have OTs who can do more than I can and have husbands and family to help whereas I am on my own and the have help so it’s not fair that I have been left to struggle on my own. When I am ahaving a flare like now it is extra difficult. If I have anaccident in bed, I strip the bed covers bu I am unable to make the bed so I have to sleep in a sleeping bag till I can get it made again. Things like getting food and drink are alsi really difficult now and getting to the toilet and brushing my teeth are difficult and things like showers go out the window.

Merlin, my cat, is rilliant though and he just knows when I am having a bad time and he is extra affectionate and will just snuggle up next to me in bed and is so sweet. Life without him would not be as good. Pets are so therapeutic and having something to love and who loves you back is wonderful. Cat are independent and so are the perat pet for someone like me. He comes and goes when he wants and I have a food dispenser with his dry food in that just tops up as he eats and he ha a water fountain that I clean out once a week and top up mid week bu holds over 2 litres and gets filtered continuously so he always as clean water.

Well I think that is eough for now so I shall go and have a nap now I think. Thx for reading šŸ™‚

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Night Owl

Aside

Thought I would do a night time post and talk about night times.

ME really messes up your sleep. You can be completely exhausted but unable to sleep or sometimes you sleep all the time and sometimes the sleep pattern is reversed. I find that if I get less than 11 hours sleep then I really pay for it. I have a doctors appointment tomorrow morning so I wont be getting enough sleep so will definitely need a nap when I get home. Some nights wen I can’t sleep there seems no reason and other nights it is because the pain is so bad and impossible to sleep through it. The most annoying thing is when I get what I call the dreaded itchies. It is like hundreds of insects are crawling all over your body and you want to rip your skin off. Sometimes it is just the crawling feeling and sometimes it is like they are biting and stinging and is painful too. It’s a common symptom and seems to come on with most people late at night when overtired and can’t sleep.

I’m on lots of medications but a couple of months ago I started on ketamine through the pain clinic and while I am still in constant pain, it does eas it more than anything els I have tried and makes it a little more manageable most of the time. It’s an anaesthetic used in people and horses and is also a class B illegal drug but why people take it for pleasure is quite beyond me. It tastes absolutely disgusting. I used to be on orimorph an di thoughtthat was bad but this is utterly revolting and makes me gag every time I take it which is 3 times a day. It can have some horrid side effects with some people such as hallucinations but they start you off on a really low dose and gradually work up the dosage. I stupidly should have got the doctor to write down the instructions because he said 1ml 3 times a day a first but I thought he said 10ml so I was in there on th maximum dosage by mistake. He nearly had a hear attack when he found out my mistake and I was so embarrassed. He couldn’t believe how I hadn’t had terrible side effects but I had just been really sleepy. I did have one night where I kept imagining massive spiders were coming down form the ceiling in the dark but it passed quickly and only happened the once. When I take it it kicks in quite quickly and is horrid. The only way to describe it is like when you have got drunk and the room is spinning and you feel like you are gonna throw up. It is like that but worse and it makes my lips go numb and feel like I can’t control my body or think properly. It lasts about 30-40 mins an di just lie down. I set my alarm in the morning early to take it and then go back to sleep for a couple of hours and I take the night one just before sleeping so I only have to deal with the lunch time one an di just lie down and try and sleep for an hour. It’s not a nice thing at all an di really can’t understand wy anyone would want to take it recreationally at all.

The other night time issue is the really random and vivid dreams. I am on beta blockers and both beta blockers and the ketamine cause the dreams. Sometimes they are scary but usually just so vivid and weird. I am hardly ver in them, it is usually like I am watching a film or reading a book. It’s hard when you wake up and it has been so vivid and you still feel all the emotions from the dream because it has seemed so, so, real.

I have always been a night owl and nothing’s changed butĀ I went through a patch where I was putting off sleeping because I dreaded the mornings so much. Mornings are my worst time of day. I wake up feeling like I have been poisoned and I am dying. It is horrible and I dread it every night. I try and stick to my routine now though of sleep at midnightish and up at 11 ish. It’s nearly 1am now and only just taking my meds and off to sleep which is bad as I have to be up at 9am to get ready for the doctors so I am gonna really struggle tomorrow and the day after.

What else is there to tell about night stuff… Oh yeah the restless leg syndrome only it is more restless body as not just in the legs. It is horrible as well.

I’m gonna take my yucky medicine and get to sleep now but I think I have said everything about night time and sleeping.

Seesaw

I thought it was about time that I update my blog and seeing as it is M.E and Fibromyalgia awareness day today, it seemed likeĀ a good day to do it. I’ trying to type this with a very beautiful but rather annoying kitty who desperately wants my attention so could be spelling mistakes a si can’t quite see the keyboard bit lol!

Well I feel like I have been on a bit of an emotional rollercoaster hence the title. I should have been down in Devon for a week to visit my parents and see my friends but had to postpone the trip so I was really disappointed. It was partly because I am just not really up to it and because my Dad would have been having his operation the day I was due and so my being there was not an option. I have been worrying about my parents as Dad will be recovering for quite a while and Mum is disabled/ill too so it’s gonna be hard for them an di just wish that I was well so that I could go and help. I’ve just felt so useless and frustrated about it and wish I could do something.

The other thing that has made me a bit down has been finding out that the council have decided that I don’t qualiy for the grant after all so I wont be getting the money for my flooring. I was relying on it and it has taken them 10 weeks to let me know I wont be getting anything which is a bloomin joke and I am not happy at all as I was led to believe I definitely qualified for it.

Been quite poorly too lately after pushing myself with the move and everything and so has been really hard physically with getting food and getting to the loo and stuff and I have really struggled. I had to go and see th eye specialist on Friday and I couldn’t drive as they were giving me special drops that dilate your pupils and so readibus took me but it meant I was stuck there for a couple of hours after. I felt so ill that I lay down on the floor in the carpark as I just wasn’t up to sitting up for that amount of time. A doctor spotted me after a while and came and took me inside so I could lie down on one of the beds. I was rally embarrassed and hate making a fuss but they were really kind to me. I’m still not over that so am in bed resting when really I want to be in the garden. Been really hungry as well but not up to cooking and have gone hungry a couple of days as I wasn’t up to getting to the kitchen. Not been drinking enough either for the same reason. I did meet my new OT though, I’ve been moved to the long term support team now. He seemed really nice and he is gonna get a social worker or someone to come and do an assessment and see about getting me some care which will be amazing and what I need but I know how hard it is so am tryig not to get my hopes up in case they say there just isn’t the funding.

I haven’t made it to church now for 10 weeks and I miss it and everybody loads. I really feel it when I don’t go and I get uite upset at missing it. I listen to UCB UK radio though an dthat really helps with having the brilliant music, word for today, teaching, etc. I alsi have the internet, obviously, so that helps me feel less isolated but I do get very lonely. Merlin has known I have been bad and he stays in with me on bad days and snuggles up on the bed with me and hardly leaves my side which is relly sweet of him. Merlin is my cat for those who don’t know. he is 2 years old an dis a British Shorthair cross. He’s crazy and affectionate and just lovely and I would be lost without him. It’s amazing how animals just have extra senses an dthey pick up on you not being well.

It’s my birthday on Sunday and so I have asked friends if they can give me an hour of their time as my present and come and do some gardening on the Saturday nd I will put on a buffet. I’m hhaving a couple of friends over on the Sunday for a BBQ as well. My new BBQ which I got from my parents for my birthday is amazing an di can’t wait to use it. You tke away the cooking bit after and the bottom can then be used as a log burner. I collected some wood from someone on freegle so I have enough wood to last the whole summer an dsomeone gave me some pots and plants so my patio should look nice and the garden will have been tidied up which will really cheer me up because it’s been frustrating wanting to do the garden but not able to. I will have the frog pond done as well. My friend is giving me her kids old sand pit so I will be getting my friends to dig a hole for itĀ  and I will make it all nice for the wildlife.

I am off to Big Church Day Out the weekend after next so I am so excite about that. For those of you who don’t know, it is a weekend Christian music festival in east sussex. My friend comes with me as my carer and we stay in a lovely B+B nearby and I love it. I pay badly for it afterwards but it is my holiday every summer and worth the suffering. It is a brilliant festival with something for all ages. There is a kids area with rides and animals an stuff. There are 3 stages, the main one, the ucb one with newer less known artists and some unsigned stuff and then the tea tent which has more traditional music an dis quite a chilled relaxing atmosphere where you can grab a cream tea and relax away from the pumped up main stage area. My friend will be away next year and I wont be able to come as my cousin is getting married so will have to save up for that so I will really enjoy myself this year.

I’ve been strggling financially and got all confused with my bills and direct debits and stuff. Part of the illness is what they call brain fog and it causes memory issues, cognitive problems an di find that I just can’t cope with bills and whan stuff comes out and how much I have to spend an di have gotten all confused and missed a couple of bills and got bank charge. CAP (Christians Against Poverty) are gonna come and help me out and get me back on track though an I am hoping that my carer will be able to help if I get one that is. It’s really embarassig trying to explain to companies that you get confused and it is even harder when ou struggle to get the right words and stuff.

I had to order new clothes from the catalogue as well ecause I can’t fit into my summer clothes anymore. I didn’t have the money to buy outright so I am so grateful to have a couple of catalogues that you pay a bit off each month. You get the interest but without it I would have nothing I could wear over the summer soĀ  needed to get clothes. I don’t go out much so didn’t need a lot but I now have 4 outfits so that will get me through. It’s upsetting that I am 5 stone heavier than when I got ill and I know most of it is medication side effects and it is hard to lose when you can’t exercise but it really does upset me so much. If I could change one thing it would be to lose the weight. Maybe that makes me vain but I just feel like these illnesses have stolen my life and now I don’t even look like me anymore. I hate looking n the mirror now and hate photos being taken. I am up to a size 18 top and a 20 bottoms and it makes me cry a lot. There have been times when I have felt desperate and thought about stopping my anti sickness meds so that I feel too sick to keep anything down but I know that is not sensible. I’ve been doig the 5:2 diet but had stopped it whn I moved as was too difficult with everything going on and now I am trying to eat all the cereal ad stuf that I have in and save money for big church day out to spend so I have been eating cereal and toast a lot and so weight has been piling on again. It’s annoying because I don’t sit around eating cakes and chocolate an dyet the weight just keeps coming. When I get back I am starting it agin though and just praying that it works.

Well I am too tired to think anymore and os I will leave it there for now. Gong to put some relaxing worship music on and just relax for a while and soak in God’s presence. God bless you all ad I hope you are enjoying the spring.

Ā 

Blessed

Well I have been in my new place for 7 weeks I think it is now. I overdid things with the move physically and have found it mentally and emotionally hard as well.

The first week I was in, I cried so much. I was just so overwhelmed that this amazing place really is my home. There have been lots of teething problems with lots of repairs needed doing. I think most things have broken and been replaced or fixed so that has been quite stressful but am now just waiting on a new washing line and pest control to come and block up holes in my loft that cats and squirrels can get in.
For the first couple of weeks, Merlin would not come out from under the covers except at night and even then he was nervous. I used bach rescue remedy which I put in his cat milk and food every day and did seem to help. He went missing for 24 hours after week 2 and I was worried sick about him but he eventually came home and stayed in for another week under the duvet like a little mole. He is now used to it and he just loves it here. He is out most of the time and just comes in in the evening for his dinner and some cuddles. He never used to go out during the day at the old place and it is so nice to see that he is happy and settled here now.

I am loving it here and still feel incredibly blessed to have such a wonderful home. It is wonderful to have all the space and be able to use my wheelchair in every room. The kitchen is lowered so I am able to cook more often which is something that I really missed in my last place. I cooked now and again but it was always very difficult and quite dangerous. I am still not well enough to cook every day but certainly a lot better than before.
I also have a proper wet room that is massive and so I can get my wheelchair in and then transfer to a proper wheeled shower chair. Again, I am still not well enough to shower every day but it is easier and I feel safer. I still struggle with things like washing my hair and shaving my legs and I am hoping that I can get another assessment by social services when I am transferred to the local long term team and get some help with things like washing and drying my hair and getting dressed. I also can’t do things like peel and chop vegetables and stuff so I just need a little help.

I love having my own garden to sit in. It needs some work and I have asked if friends can give me an hour of their time next month the day before my birthday to come and do a bit of gardening or painting inside and get stuff done. I bought myself a bird feeding tree/station and have positioned it so that I can see it and the bird bath from my bed. On days when I am stuck in bed, I sit and watch all the different types of birds that come and feed. I don’t know much about birds but I am getting good at identifying the different types. So far there has been wood pigeons, collared doves, blackbirds, starlings, great tits, robins and another that I am not sure what it is but I think might be a finch of some sort. I want my garden to be a real haven for wildlife and not a tidy garden. am getting a very small pond for frogs and toads and stuff and having an are with wildflowers that are good for bees and butterflies and a log pile for beetles and stuff. There are already some bushes/shrubs and will get more planted and also a cherry tree. I want the patio extended as well. I know this will all take time and money and I can’t expect it to be all perfect this year but I have a vision of how I want it and gradually I will get it done bit by bit. I am also getting a BBQ from my parents for my birthday so am really looking forward to having people over for that.

I have such lovely next door neighbours. My bungalow is semi detached so just the neighbours on 1 side and they are just such a lovely couple. They are about my parent’s age and have really made me feel welcomed and looked after. I had them round for dinner and used my table for the first time. They have an old garden table and chairs that they said I can have for free. It needs a good clean apparently but will do the job. I would love a nice new set but just can’t afford it. The husband has offered to put my cat flap in for me and plumb in my dishwasher. I don’t feel like I can keep bothering him about it but hope that he gets it in soon. It makes such a difference to have nice neighbours after the awful problems that I had before with a couple of neighbours.

I have found it emotionally quite difficult sometimes too. Like with the garden. Part of me has all these plans of how to get it nice but there is a little part of me that still wants toget married and thinks is there any point spending money and resources if you wont be here forever but then another part of me can’t see how that will ever happen so wants to look at it like this is my forever home. I’ve also got myself confused with my bills and got bank charges and stuff from missed direct debits. My mind just can’t cope with working out what money needs to stay in and when the money comes out. It is because I get my ESA every fortnight then get my DLA every 4 weeks but then the bills come out monthly and my mind just simply cannot get around it and I get confused. I’ve asked CAP (Christians Against Poverty) to come and help me sort it all out because I am getting into trouble. They helped me get debt free last year so I know they are so helpful and really good. It is embarrassing admitting that my brain doesn’t work like other people’s does. It is part of the illness and one that I find incredible embarrassing. My Dad is always going on at me about money and he just doesn’t understand that I have problems with memory and cognitive stuff and I get really, really, upset and feel like I am stupid.

I was meant to be going back home for 10 days in a couple of weeks for my birthday but I am not well enough to go. My Dad’s operation is on the 7th and so it is probably best that I am not there then as there will be no one to look after me or carry my case and stuff as Dad wont be able to get up the stairs for a while and isn’t even allowed to lift a kettle. I’m hoping that he recovers quickly and they can come and visit me here instead but we shall see. I wish that I was well and I could go back and look after Mum ad Dad during this time but I just can’t and I find it frustrating. My brother is in New Zealand for another 18 months as well so he can’t help either and I do worry about how they are going to cope.

This place is starting to feel like home now and I am feeling more settled. I still can’t believe how blessed I am. It is so peaceful here. Out front is a small wooded area and there is an owl out there ad you can hear foxes mating calls and just do many different types of birds and then there are the squirrels of course. I just love it here so very much. God knows me so well and knew exactly what I needed and that is quiet and peace and nature and he has given me all that I prayed for and more. It has been a time of mixed emotions but more than anything, I just feel so incredibly blessed! šŸ™‚

Realised that I hadn’t really mentioned my health or medications and stuff so am editing to include this as well. Before I moved my GP insisted that I come off dianette which is the contraceptive pill that I was on for the poly cystic ovary syndrome. He thought that as I spent so much time in bed and have put s much weight on that I was at higher risk of a stroke so he insisted on putting me on the mini pill. Well it is nice not to have any periods but it is not controlling the acne like dianette did and I am not all spotty and it is really getting me down. I have also noticed that I am more hairy and would have to shave my legs more than on dianette. I saw my new GP and explained that now I have moved, I am out of bed more and in my wheelchair but that I do exercises to reduce risk of a blood clot but she says I am still too high a risk for dianette and wouldn’t put me on it. She gave me some cream but it is not helping at all and I can’t even reach some of the places like my back. I feel more emotional as well and definitely more snappy.

I had a virus following my visit to the GP surgery and was ill with a d+v bug for 5 days. I wasn’t able to keep my medication down so I was also having withdrawals and in agony. I also had a few accidents where I did not make I to the loo in time and ended up being sick all over myself and from the other end too. I got really upset about this, I hate it when I can’t get to the loo in time. One time I couldn’t even get out of bed in time and so had to strip the bed, wash the mattress and bedding and sleep in a sleeping bag because I am physically not able to make the bed and I have no carers.

I’ve been getting really bad muscle spams recently. They had eased off once I started baclofen a couple of years ago but started getting really bad again lately so we have doubled the dosage but it is just not helping. I can’t even stand up long enough to stand at the medicine cupboard and put my pills into the daily pots. I am also getting spasms in my face tha make the bottom of my jaw jut out to the side and it is so so painful and keeps doing it. I feel self conscious about it ad when it happens, it is so painful I just cry and nothing helps the pain.

Talking of pain, I also started on ketamine the week I moved house. I had an early morning appointment at the hospital and as anyone who knows me knows that I don’t wake up until 11am and it takes me a while to come round. Well this was a 9am appointment and so I had to be up at 6.30am to get ready in time. I was not with it and my pain specialist talked me through possible side effects including feeling detached from the world, anxiety and hallucinations to name just a few. He also told me the dosage to take and I wrote it down as he told me. I went away and start taking it and I did have 1 night of mild hallucinations and it made me very sleepy and feeling sick and dizzy, oh and it tasted vile. I was nearly out of it and so I called his secretary up and she got him to phone me. he didn’t understand how I was nearly out and asked me what dosage I was taking and I said 10mg three times a day like you said and he was shocked ad said, “no, I said 1mg three times a day!” so I had been taking 10 times as much as I should have and he was surprised that I hadn’t been having terrible hallucinations and stuff. I immediately reduced it and over the weeks we have been slowly increasing the dose and I am back up to 10mg. I have to lie down for an hour after I take it because it is like when you are drunk and the room spins and you feel like throwing up. After lying down for an hour or so I am fine but it isn’t pleasant. I do think I have seen something out of the corner of my eye but when I look there is nothing there and I do get a bit of nausea and spaced out a little but it is helping with the pain. I am still always in pain but is at a more manageable level and I have been able to cut down on the oxynorm which is good. I could take them and be in less pain but I do worry about taking such strong opiates so I only take them when the pain is unbearable or if I am going out the I take tem too as going out is always bad. The ketamine doesn’t help the head and face pain that I get though, nothing touches that which is awful.

I haven’t been to church for 7 weeks now s just not been well enough an di really miss it. A few people from life group cme to mine on Thursday which was nice but I hope that I will be able to go tomorrow but not looking great.

I have also had a cleaner start who was recommended to me by a man who also uses readibus and she is really nice and a good worker. I am gonna have to cancel her this time though as I have had bank charges and they have taken what was the money for her which is a pain. Hope she doesn’t mind.

I need to go to sleep now, feeling dreadful so I shall finish on that note and edit again if I remember anything else lol!

Freedom!!!

I meant to do a weekly blog but I have been rather busy so haven’t had time to do it until now. I have been fighting to move home for 2 and a half years now as my current place is not suitable for me needs or safe for me. Well I am moving tomorrow to an adapted bungalow in the area that I wanted and it is everything I prayed for and more! It still feels a bit like a dream and not quite real but once my stuff is in I am sure that it will soon feel like home. It is in the area of town that I wanted so that I am close to friends and can still get to church easily. It is in a very quiet close that only has 9 disabled bungalows and out front there are loads of trees so it’s really peaceful. I have a secure mobility scooter box outside to store it in and I have a back garden so I can dry clothes outside and can lie out in the garden in the summer. The garden needs some work but I have lots of friends that I’m sure will help me out. My new place has no flooring but I have applied for a relocation grant from the council which hopefully I will get and can then get flooring and curtains. I also have room for a fridge freezer and a dishwasher so am going to be saving for them. I have been given 2 sofas and some other furniture and feels so blessed at the minute Everything is just coming together at the right time.

There have been times over the last couple of years that I have ranted at God and asked him what was going in and why I wasn’t getting anywhere with moving. Now I can see that God’s timing is perfect and that he was waiting for my perfect home to become available. When I found out I cried so much from sheer relief and joy and as I went round it o Tuesday at the viewing, I was smiling but really teary as well and overwhelmed at how amazing it is. The old lady who lived there before had things put in to help her and when she died they were left in so I now have a special toilet that is like a toilet and bidet in one so it cleans you. The front and back door ore electric so I press the remote control and they open. The windows in the living room and bedroom are the same, open with the remote and the curtains in those rooms do the same thing. It’s just amazing!

I’m really happy about moving but it has been difficult as well for many reasons. I have really struggled with sorting out change of addresses and sorting out bills and internet and phone and everything and trying to sort through stuff an put in boxes or ready for friends to put in boxes has really taken it out of me. I should have let friends do more instead of overdoing it but I don’t like to be a pain and be asking for stuff all the time. I have lots of people helping with the move and I feel so incredibly blessed that so many people care about me and will help me. I really couldn’t have done it on my own so I am grateful to them but I know that it will take me resting for a few weeks to get over moving house. The move has also brought up some emotional stuff as well that I am dealing with. I had certain expectations and dreams when I moved here 4 and a half years ago and obviously since getting ill, my life has changed dramatically and lots of my hopes and dreams have not happened and it has been quite emotional dealing with those feelings of loss and failure. When I moved here I was going to study to be a midwife, I was very active in church and doing training there. I volunteered for a local charity and I had a social life. I was so happy to be living next to the river and would go for long walks along the towpath every day and feed the ducks. I hoped that I would meet someone and get married and that when I moved next it would be to start my married life. I know that these feelings are similar to those felt by others that have chronic illnesses. You have to grieve when you get ill and learn to live differently and some of your dreams become impossible and it is a really painful thing to go through. I have also had to be realistic about the move and while it will make life so much easier in so many ways, it will not make my life perfect. I will still have days where I am stuck in bed and unable to cook and shower and stuff but will be able to do things like that more often and safer which is brilliant.

I think I mentioned in my last blog that I have had trouble with some neighbours here. Well, my next door neighbour has mental health problems and is obsessed with me and has made my life hell for a couple of years now. She has cut the brake wires on the scooter, banged on walls and screamed and screeched at me, spread lies, reported me to the rspca and benefit fraud and generally been as unpleasant as possible. Well I have wondered where she has been getting her information about me from for a long time and thought maybe a neighbour was gossiping but on last Friday I got home from nipping to the shop for newspapers for packing and she was standing behind her door speaking loudly on the phone to the counsil telling them that I am not disabled and that they shouldn’t be moving me. I could hear and just thought it was annoying but then she told them my new address and said that another neighbour had told her. I was so upset and angry and stupidly believed it was another neighbour who I am friends with and unfriended her on facebook. In the morning when I had calmed down a bit I realised that I hadn’t told this other neighbour or anyone the name of my street so I had to go on and send a message to her and apologise for being so stupid and hurtful. I figured out that the only way she could possible know my address is if she had been in my flat while I was out as my address was written on a notepad next to my bed. About 3 years ago before she decided to start the hate campaign, se offered to feed my rabbit for me while I was away. She must have had a spare key cut because there is no possible way that she could have found out any other way. The police came round but there is not much that they can do but will write to her warning her that she must not come in my flat. I am so happy to get away from her and the young bloke that have made life so bad for me for so long and have made my health worse because of their behaviour.

It has also been a worrying time for my family. My Dad was diagnosed with prostate cancer and he has been having tests to see if it had spread. his bone scan came back clear and then this week we found out that is MRI came back clear as well which is brilliant news. He will have an operation to have it removed and will take quite a while to recover but hopefully that will be the end of it. I know my parents have really wanted to come and help me move house but they just can’t with everything that is going on and I wouldn’t expect to but I know they really wanted to. Hopefully they will e able to come soon though but obviously depends on when the op is and recovery times and stuff. I can’t wait for them to see my new home though.

I am having to change from virgin media as they cannot do a landline in my new place so am going with a new company who will hopefully be good and will e saving me quite a but of money each month too. The only problem is that I wont have internet or landline for a couple of weeks at least so will miss chatting to my friends on facebook and in the disability groups but it will probably be good for me to just concentrate on resting for a couple of weeks anyway. I will do some reading and listen to UCB radio and no doubt it will go quickly.

I am going to have my last bubble bath, no bath in my new place, and get an early night as it’s gonna be a long day tomorrow. Hoping the rescue remedy will help it not be too stressful for Merlin. He’s not a happy kitty with all the boxes and change but am hoping that he will settle in quickly and it is nice and quiet for him and lots of trees to climb. I will say goodbye for ow and looking forward to updating you on my new place soon!

Exciting times!

I did plan on just doing this blog once a week but think I will just do it when I feel like it. I couldn’t wait to do this one as had a bad couple of days but then an amazing couple of days.

Well the bad ones were first. I have had trouble with neighbours for a very long time but for a while it settled down for a bit but recently has started up again. my cat got chased by my neighbour’s dog and got hurt. he is ok now but he was in shock and so scared. The dog’s owner was told a few months ago that they must keep it on a lead, he had been encouraging it to attack my cat and let it wander off up the road where it could get run over and basically not being a responsible owner. It was making my heart bad and I just got abuse from them about it. For a while they kept it on a lead but the last couple of weeks have started letting it off again and then merlin got hurt. Sunday night he was out there with his friend and the dog was off the lead so I took a video of it off the lead as evidence and then him and his mate started threatening me. I was so angry about Merlin having got hurt that I lost it and started shouting at them which they like as it gets a reaction which is what they are after. they have threatened to burn my flat, smash my windows and my car so I reported it to the police. This made my POTS worse and my heart rate got very high so I called 111 wanting to ask a doctor if I could take extra beta blockers and if this would help but instead they insisted on calling an ambulance which I didn’t want. ECG later that said I was tachycardic which I already knew, I always am and I said I didn’t want to go to hospital so was a waste of time. I was o poorly Monday as well because it.

I had been looking forward to Tuesday because I was having 2 friends over for a girlie night and I was also having an OT assessment from social services during the afternoon. The OT assessment went really well and she was lovely. Then in the evening my friends came round and I got my toenails and fingernails painted and sparkly things on them. we had cocktails, rather too many for me I think lol, and nibbles and birthday cake as it was my friend’s birthday. It was such a lovely evening and so good to have some company.

Well I had been talking to my OT and she wasn’t happy that I hadn’t been moved and that I was still a band c which goes against their own criteria so she was gonna write another letter to the council housing about it but then I woke up today to find a letter from ability housing trust. I had applied for a flat/bungalow a few weeks ago which I really wanted but hadn’t heard anything so assumed I hadn’t got it. well now it looks like I will be moving in about 3 weeks. They are sending someone round on Tuesday to check that I do actually meet their criteria, am disabled, use a wheelchair, need to move as where I am isn’t safe etc and to chat about the tenancy and stuff and then I will go and view and then decide if I want it. I already know I want it though! It is in the area that I wanted, near friends, is a purpose built wheelchair adapted place so will be perfect for my needs, it is in a quiet close with just the disabled bungalows, perfect for my cat as it is quiet and has woods at the back. as a tenant I will also be able to take advantage of the support that they offer and their office is in the same close. My OT is also applying to a charity for me to try and get me an electric wheelchair so am hopeful about that too and would makes such a big difference. For so long I have felt like my life is on hold but now I feel like I am getting it back a bit. I’m struggling physically today as I had friends round last night so can’t do much but I knew it would be the case but sometimes you just have to do things and pay the price or you never get out or have any fun at all.

My parents said they would like to come and help me move but we found out a couple of weeks ago that my Dad has prostate cancer so depending on results and treatment they may not be able to make it. he had the bone scan results back and they are clear praise God so it hasn’t spread there. he’s having an MRI on the 12th I think and that will tell if it has spread or is contained so we are hoping it hasn’t spread and praying loads about it all. Prayers for my family would be good. my Mumis poorly too and my dad is her carer so it’s going to be tough fo

Beginnings

I had the idea to write this blog some time ago but just never got round to doing it but am beginning now. I want this to be a really honest look at how life is for me and how it affects my walk with God and my day to day life. I will try and be as honest as I can and this is where I can let off steam and be real. I will try and be honest about all aspects of my life even if they are embarrassing. I hope that people will see that it is honest and real and like it.

I should introduce myself. I’m Tasha, I’m 34, am a Christian and suffer from M.E., fibromyalgia, POTS (postural orthostatic tachycardia syndrome), other autonomic dysfunction, PCOS ( polycystic ovary syndrome), IBS, left pelvic kidney and possibly EDS type 3Ā but not diagnosed with that yet. I live in Reading, Berkshire, England, with my cat Merlin who is almost 2 years old and I love him soooo much! I wanted to do this blog so that people can see how life is for someone who suffers from severe chronic illnesses and is a Christian. I was in denial for quite a while but am trying to be real now and thought this would be a great way of getting stuff off my chest and sharing with people how my life is. I will apologise now for the spelling mistakes, punctuation mistakes and for using the wrong words. I get a thing called “brain fog” which means that your cognitive abilities are impaired. The level of it differs day to day and hour to hour. Sometimes I get words muddled up, slur my words, my short term memory is almost non existent, get distracted in the middle of a conversation etc etc…

I should share a bit about me and my illnesses. I have always had a bit of a rubbish immune system and got things like whooping cough, measles, chicken pox and all the usual childhood illnesses. I was a very ill baby as my Mum has epilepsy and I was born with those in my system. I almost died twice as a baby but was revived and they couldn’t find out why. One of the meds that my mum was on is called sodium valproate and back then they didn’t know it caused birth defects and so I have only got 1 kidney. My left one is on my pelvis somewhere and shrivelled up and dead. This happened when I was in the womb. I also blame my dodgy immune system onĀ thisĀ too. I have also always had problems with my joints and muscles but growing up I thought it was just normal and due to an abusive childhood I just kept quiet about stuff so my biological dad wouldn’t have any reason to kick off and hurt me and Mum, he was a violent alcoholic. When I reached my early teens I developed problems with my feet where the arch would collapse and instead of going in would pop out in a lump and this would cause all the muscles in my leg to spasm and cramp and was so painful. We were told that my muscles didn’t grow at the right rate or something and I had to have special arch supports and do exercises each day. It got me out of PE whenever I didn’t want to do it as I would lie and say my feet were playing up lol! You would have thought this would have been the ideal time to mention my joint problems, especially my hips but for some reason I didn’t. My Mum was married to my step dad by then and IĀ call himĀ Dad. I also have a step brother called Matt but I call him my brother. As I have said earlier, my immune system is pretty crap and I used to get bronchitis every year starting at 20ish. I can look back and see POTS symptoms from my teens but it was mild and when I told the doctor I was told they were panic attacks. I developed gall stones about 8 years ago and were told that I had ibs or heart burn wheni would end up in a+e and it wasn’t till a couple of years ago after moving to Reading that they discovered that I had gall stones and a pretty scarred gall bladder so that explained all the pain I’d been having. When I moved to Reading I started an access course in midwifery but due to the pain from the gall stones and after collapsing in the loos I was chucked off the course. This was before I was diagnosed. I was doing training and doing various things at the church I was at and also doing voluntary work at a charity that does advice for crisis pregnancies and counselling for people who have had abortions or miscarriages. 3 years and 2 months ago I had the flu jab at my doctors and within 24 hours had what I thought was terrible flu. I never recovered and that was the beginning of the ME. I was also told I had fibro after I saw a doctor when I was visiting my parents and he was very experienced in ME and fibro and he pressed certain parts on my body and told me I definitely have fibro as well as the ME. I was only diagnosed with POTS a year ago. I had been doing lots of research on line and discovered that quite a few people with ME had this and so I looked at the symptoms and they fit so IĀ asked my GP to refer me to a cardiologist that understood POTS. Most doctors have never even heard of it so I had to take info into my GP so he knew what I was talking about. I saw the specialist in March last year and was diagnosed and I am now waiting to see an autonomic specialist in London but it is about a year’s waiting list and I have only done half so far.

Since I got ill I have gotten a lot worse going from walking with a stick at first to being a wheelchair user and spending about 90% of my time in bed. It’s really difficult and I eel like th eillnesses hav stolen my life and that I don’t live anymore but just exist. I lost a lot of friends hen I became ill and everyone who I have spoken to on forums and groups have also lost friends when they became ill too. The church I was in didn’t handle my getting ill very well and I was subjected to what I have come to realise was spiritual and emotional abuse. I was abandoned and when I said that I was lonely and needed help and support, I was told that I needed to make more of an effort and that what I wanted from a church was unrealistic. I knew it wasn’t as I had grown up in a church from 9 years old that really was like a family and was supportive. I also had people tell me that I was ill because of lack of fait or unforgiveness or hidden sin. I had a few months where I hadn’t been to church as not well enough to do mornings anymore an dthey had no evening service and instead of them checking on me, it was just assumed that I had left and there were lots of rumours about it. I had been involved in starting a ministry and had undergone leadership and evangelism training etc so it wasn’t like I wasn’t known, I was part of the wider leadership team. When I heard that everyone thought I had left and no one had bothered contacting me, I decided that I would leave and so I started trying a few churches that had evening services. As soon as I walked into my church, I just knew it was where God wanted me. The people there were so welcoming and they love me for me, not what I can do I have been looked after, encouraged, challenged, supported and it really is like a family. My confidence was so low by the time I got there and I was living under this false guilt that had been spoken over me and because my old church made me feel like it was my fault but slowly I started to trust and to let people in. When I had my gallbladder out, it caused a massive flare up and I was stuck in hospital for a couple of weeks. My church family were amazing, people fed my kitten and played with him, they came and visited me, bought me stuff, prayed for and with me and were just wonderful. I feel so blessed to be part of this church and am so glad that God led me there.

When I had my gallbladder removed they decided to keep me in overnight as I had ME and they knew it would be harder for me. However it really affected me badly and I needed 2 nurses to help me onto the commode, couldn’t walk at all and was os so poorly. the time I was in hospital was one of the most traumatic experiences of my life. The first ward that I was on had one nurse who was quite deaf and you had to shout for her to hear. I was so weak and couldn’t shout so it was quite difficult. The doctor decided that he didn’t like the meds that I was on for the E and fibro and halved my dosage without telling me so I was in agony nd having withdrawals. the nurse said that the dose I was on was higher than the maximum dose allowed which I knew wasn’t true an di had a fight to get them to reinstate my proper dosage. I was also accused of being an addict and laying it on thick to get the drugs. I had orimorph at home for when the pain was so bad but they refused to allow me to have it. I am very sensitive to lights, sounds, smells and being in hospital was the worst place for me. I was moved to the second ward and it was a noisy busy ward and the staff there had no idea about ME apart from 2 nurses from Ireland who were amazing and they had both had experience in neurology and so understood about the lights and stuff. the other nurses thoug again had no idea and one was particularly nasty to me. One morning I was physically unable to talk or move and she came over and asked me why I was not up and eating my breakfast. I couldn’t answer and then she said that I should go and have a shower and when I didn’t answer she told me I was really rude and she had no time for patients like me. One of the hCAs came over and asked if t was my ME and communicated through me blinking. She then gave me a bed bath and was very gentle and lovely. Another day I could feel a sensory storm coming on. That is when I have been exposed to too much sensory stuff and it overloads the brain. I can only describe it like you are in a cave and every tint noise echoes and seems a hundred times louder than it is. You cannot move, talk, communicate at all and are lost n the cave in pain. It is a very frightening thing. My riend were there with me and I was lying in this and having quite bad muscle spasms which were making me twitch a lot and my friend massaged my arms and legs for me and they both prayed over me while I was like that. I had been asking for morphine for the pain of the spasms and joints and been refused and they were no use with this either and it was a weekend so they couldn’t get a doctor to come for hours. There were other examles like this too. I was waiting for a place at a respit place where I would be looked after and have physio every day but after over 2 weeks of neing in hospital I knew I was just gonna keep deteriorating so I persuaded my OT and physiotherapist both of whom were wonderful, that I could go home with carers coming out 3 times a day.

I will now tell a bit about the 6 weeks of care that I had. Well it was a pain as I had no spare keys so would have to pass the keys out the bedroom window to the carer when they arrived but they didn’t all know this, lack of communication, so they would be banging on my front door for ages lol. One that came was terrified of cats and saw my kitten and freaked out. One was really rude and said that I should make myself do stuff and that I should be grateful that I have arms and legs to hurt because some people don’t. I complained and ended up with her every day even though I said I didn’t want her. I didn’t dare complain again as I felt I was being punished for the first complaint. After 6 weeks the care stopped as it was only intermediate care an di was left to cope alone.

I must say that social services have been so so good with giving me equipment to help. I have a perching stool to sit on in the kitchen, grab bars dotted about, bed rails, riser recliner armchair, pillow lifter and special bath cushion that lowers and lifts you in and out of the bath. I don’t get any care though and am having another assessment on Tuesday and am gonna beg for some care as I am not coping at all but I know that there have been lots of cutbacks so it is difficult. I also have a manual wheelchair from the NHS but I have no one to push me and can’t self propel very far at all andit is agony to. I am going to apply to a charity that give people electric wheelchairs as you just can’t get them on the nhs anymore with the cutbacks so hopefully the charity will let me have one of theirs. I also have a special mattress form the nhs as I was beginning to get bed sores and it has helped loads and is so comfy.

I live in a council place and it is a studio flat and so is very small. It cannot be adapted for my wheelchair and so I spend most of my time in bed. I fall a lot when going to the bathroom or kitchen or wherever. I fractured a pelvic bone in November or December time which was very painful. I have been fighting the council for over 2 years to be moved but up until recently they were ignoring all the medical evidence and saying that I wasn’t a wheelchair user and didn’t need moving. I contacted my MP and he managed to get them to look again and I am now in the correct category for a wheelchair adapted place. I have to bid on properties that come up for rent and are suitable but I have not been successful so far but hopefully will get somewhere this year. Living here is dangerous for me and it means that I am not able to cook more than twice a week at most and so I live mainly on snack food which is not healthy. I struggle with personal care as well and don’t do housework so the place is usually a tip. I hate living like this and get very embarrassed.

I do try and get to church on a Sunday night but am not able to get there every week and notĀ at all during a flare. I have a charity called readibus that collect disabled and elderly people from their homes and take them to where they need to go and then take them home after and is a free service. They take me into town on a Wed afternoon for 2 hours if I am up to it. they take me to shop mobility and I swap my chair for an electric one and go round town getting a few bits of shopping and sorting money stuff and then treat myself to a costa. I get very ill the next couple of days but I do try and go every fortnight if I can just to get out of the flat.

Well I can’t think what else I need to tell you, that seems to be everything I can think of. The following posts will be about how my day or week has been but this was just to let you know some back ground stuff. I will be keeping this as honest and as real as I can and will try and make it a warts and all account of my life with illness. There may be some swearing, and I will try and be honest about all of my medical problems even If they are personal and embarrassing. I will try and be honest about how my walk with God is going and how I aam feeling. I know that God has big shoulders and he can cope when I am angry or upset with him and knows how I am already feeling before I say it lol so I may as well be honest about it.

Bye for now and I hope you will keep reading my blog. God bless you! xx