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!

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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 3 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 on this 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 I call him 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 I 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 not 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