The worst few weeks 

So this is a hard post. And I delayed it until it was an appropriate time to talk about the last few weeks. 

I managed to collapse in morrisons which was no fun. And have had to go to hospital for blood transfusions and steroid infusion as my kidneys and liver aren’t working as they should be. They have tried to admit me to hospital but had to refuse as I needed to be at home with the kids so I could free up Rob to be with his family. So it has been really hard. My pain levels are through the roof at the minute so thats a run down of my health. 

On the plus side I have finally been happy using my wheelchair and mobility scooter. Used my wheelchair to go to a local light display with our family and my best friend and her family and honestly had a great time. My wheelchair didn’t make it worse at all. It made it better as I wasnt in agony and miserable. And as I am so weak at the minute it meant I could actually do it. Without the wheelchair I wouldn’t have done. I have been in danger of staying home too much because it’s easy but this really helped to remind me that I can have a good time. 


And then on the Sunday me and Rob went to white rose and I used my scooter and yet again it didn’t ruin my trip. So a lot more positive about actually being able to enjoy myself. 

And then my new job is finally about to start. I am starting my training this week. Had an absolute nightmare getting a reference from my old job. Two months it has taken and eventually had to complain to head office. But it’s finally sorted. So excited to be back in the world of work. Quite excited to be back in an admin role too. Got some nice skirts to wear so looking forward to getting started. I really need to start doing some work on my degree too. These last few weeks have just been non stop. 

My next update is Jess. She is doing good. Had parents evening and after having quite a difficult year last year with her teacher I really like this one. She is doing really well at school and makes me so proud at who she is becoming. 

Then onto Finley. My little fighter. He has settled into school a lot better but I had a harsh week with having to accept the reality of life for Finley. His problems aren’t enough to stop him understanding. He is very aware that he can’t talk like everyone else and he doesn’t think like others. I had an appointment with his paediatrician and it was hard. We were talking about diagnosis. We are no closer to one and he said as at the moment his problems don’t tick the box of one thing we may not get one. He has autism traits, he has specific language impairment, he has some adhd traits and has sleep disorders. They said at the moment they would class him as learning and speech disabilities and I found that really hard to take. He is such a clever funny little boy who is so incredibly affectionate that I find it hard to accept a learning disability. But the doctor was good at helping me understand. She said it isn’t that his iq is lower or that he can’t learn. Just that his brain works differently. And then we went to his football class on Friday and he just seemed to stand out so much for being different. I spoke with his teacher who agreed we can help more as he is in his own world. During the matches he was just running in circles and not even looking at the ball. But bless the teacher then gave him man of the match for effort and I nearly cried. Just so lovely that he is the only ‘different’ child there yet they are so accepting of him. 


Now onto why our last few weeks have been so hard. My wonderful father in law has fought cancer for the last few years more bravely than I can ever imagine anybody could. He has never given in or wallowed in the hand he was dealt. I have always been incredibly lucky to have such a wonderful family as my inlaws. He has always been a great grandfather and without him I wouldn’t have my wonderful husband. Rob has so many personality traits of his dad and so many similar physical attributes. This wonderful brave man lost his fight. And it really was a fight. 

We love you George and will miss you always xx 

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5am urgh

So seen as I have little else to do at 5am I thought I should update this. I have been a little slack. Yet again. 


We are struggling to settle finley in at school so all my energy and worry has been on that this week. And he started football lessons last night which he loved. He is growing up into a smart, loving and incredibly funny little boy and it’s so frustrating that I want the world to see that but all they see is an unsociable non verbal child. Hopefully one day things will improve.

Jess is doing well back at school and has quit all her other hobbies in favour of the one that her life revolves around. Gymnastics. I think this may be karma for the dance shows and competitions I forced my parents through as a child as I am going to be a ‘gymnastics mum’ ha. Her face lights up when she is doing it though so I love to watch her. And I know I am biased but even her coaches said she is naturally talented. 

Now onto me. Am waiting to start the new job. As it’s in a care home I need references and police check back before I start. Am still really excited. Also officially started my degree now which is great. So all that is good. 

Also had my first appointment with the surgeon about having a gastric bypass. I have decided to go ahead. My health is just so rubbish that I want control over something. I have never ever been slim and this would mean hopefully within a year of the surgery I would be a normal weight. Which at the minute just feels like a dream. I am doing well with my diet though. This is the best I have done in so long. It helped hugely that my husband has done it as well. That support really helped. 


Health is pretty much the same. Now do most of my treatments at home which is good. A lot better than trecking to the hospital. Have considered changing hospitals but I really like my consultant and don’t want to leave him. Had picked a hospital near my inlaws so they could look after finley while I was there. Obviously I don’t need childcare while he is at school. But think I may just stick with the long drive for now. Still on the dmard injections (chemo drug). On the maximum dose and the disease is still spreading. My wrists and elbows are getting hit the hardest at the minute. So now waiting to add a biologic drug. The nurses did an ace job with blood taking this week…..


Generally just feeling tired all the time and my back is really sore and the only place I am comfortable is on the bed. Sometimes I feel like poor Rob gets home from work and I go straight upstairs. I need to suggest he comes up and watches a film with me up there. Need new sofas really. Ours were only cheap and are about 8 years old now. But just not in a position to spend money on them at the minute. In fairness need a new bed as well. Maybe after Christmas we could put my wage to one side every month. Until then santa needs all our spare money ha. 

My mood is so much better than it was. After a really low time I feel like I hit rock bottom and am on the way back up again. For those who know me well the friend who has caused me nothing but hassle has finally gone. He decided after I have been a good friend to him for 8 years that he doesn’t like me and can’t force himself to be friends with me. At first I was really upset, then it struck me he has done this many times before and will probably be back. And then struck me that I think I will be happier if he doesn’t come back. He is my worst critic and one of those people I hate who believe they can say what they think if it’s the truth no matter who it hurts. Why do people think their opinions are that important that people want to hear it. It’s my pet hate. It really is. I can’t stand the whole attitude of ‘I say what I think with no regard for anyone else’. I remember reading a rant a comedian Jason manford wrote about the same thing. And it was absolutely spot on. If someone says ‘I always say what I think’ to me I don’t see honesty. I see arrogancy and ignorance. So yeah…..he has gone ha. 

But I think it’s what I need. I am so lucky and happy with my current friends. Also just reconnected with a beat friend as well. We drifted apart down to a few things but saw each other Tuesday and it was great. We slipped back to how we were and I realised how much I missed her. She is away now for 12 weeks but I am convinced we will get back on track once she is home. I have always struggled with friends and it’s amazing to be at the point where I have a best friend and a handful of close friends. Kelly and Sarah have particularly dragged me through the last year and will always be grateful to them both and hope I am a good friend back. 

Ooh am also learning to swim again. It’s painful but it’s literally the only exercise I can do so I am determined to do it. I have my waterproof mp3 player so just lose myself in my music and try to get through it. My technique is improving. Had to cancel my second lesson thanks to my 9 month old car breaking. Now have a hire car so will be at my swimming lesson tomorrow yay. I aren’t convinced I am actually going any faster but think I am enjoying it more now. I will always miss the gym and dancing but needs must and I refuse to not exercise. 

Anyway I should really shut up. I now have finley downstairs with me too so am being subjected to rescue bots on Netflix while I have a dog and cat fighting over who is sitting on my knee.

Ooh last thing. My puppy is all grown up and is now off lead at the park. Makes walks on crutches a pleasure now ha. 


Right promise I will shut up now. This is a sure sign I have cheered up ha ha. 

Been so ill

Always feel a bit guilty when I don’t get around to doing this when I see how many views I have had. It still amazes me that anyone is interested in reading someone’s moaning about their life completely changing and dealing with accepting the changes. It has really shown me who my friends are. And those that have proven themselves have made me feel very lucky.

I have had a rubbish few weeks of feeling terrible constantly. Psoriasis has got worse. That has always been a small part of the psoriatic arthritis for me. But it has flared on my legs. Which adds more pain to every single step. So that’s been fun.

I am in the rubbish place of do I feel this terrible because of the drugs or the illness. Long term, everything is still so up in the air.

I have done nothing as been so ill. No choir or slimming world. Hoping to be able to go next week.

I have been really fed up which is why I haven’t been on here I suppose. I am trying my best to give my kids everything but it’s so hard. Jess has just started an acrobatics class on top of brownies, performing arts and piano. Finley has just started kick boxing that he loves. It’s so hard to do everything. And then have energy for myself with this stupid illness. Have had a switch around of some medications though so really hopeful things will improve soon as well.

Seen a new trampoline gym is opening near by and they do exercise classes on a night. Really tempted to try my little trampoline at home and see if I can withstand it with my ankle and knee supports on. Last time I couldn’t but it was a while ago. I need sort out my card for swimming as well. Thanks to being disabled I can get cheap swimming. Ooh and I can get a card for the cinema so the person who comes with me is free. Technically they are my carer ha. Being disabled needs to have some benefits.

Managed to have some fun with the kids and went to an adventure playground with a jumping pillow. Actually had a go and was loads of fun. I could only do a few jumps before I felt like my ankles were going to snap but it was awesome just having normal family time. Need to do something tomorrow. It’s all I have of the weekend now. I take my methotrexate Friday night and then sleep all night and sleep all of Saturday and then Saturday night. So my weekend is sadly just one day. Feel like I need to make the best of what I have. Although the weather doesn’t make it very easy. Hated summer as my body temperature is constantly high so hot weather is 100 times worse. But am looking forward to it now. Especially as we are expecting a new addition to the family.

After a lot of discussions we have decided to adopt a dog. Have had a home check and been approved by the rescue. We have been matched to a dog already. Just waiting for everything to happen. The kids are desperate for one and I have read a ridiculous amount of studies about how they help children wirh autism. Although finley is sulking at the minute as we have been matched with a female dog and he wants a boy ha. I have only told one friend so far as I know people will be judgemental with me being so ill. But the doctor thinks it will do me good. And dogs don’t mind being walked by someone on crutches or by someone using a mobility scooter. I might be ill but we can still offer a really good home to a dog and we are all excited about expanding our family. Plus I think it will be a little companion for me on bad days. Have spoken to a lot of other dog owners with my condition so have done my research. Plus the dog we have been matched with is lovely. So just awaiting the whole adoption process. It’s something good for us all though.

Rubbish weekend

So Friday is chemo day so I always know Saturdays are hard but it is completely ruining my weekend. I fell asleep at 9 on Friday night and didn’t when up until 11.30 on Saturday and did the same Saturday night. And I am exhausted again now. Part of me wonders if should move chemo back to during the week so get my weekends back again. I am moody as well. Earlier on Rob told me 4 times something was on the right but my mind couldn’t focus and I got really angry at him.

Ooh found out today I can get a card so that when someone goes to the cinema with me they go free as my carer ha. There is a perk to being friends with me ha.

Only thing I have done this weekend is go to whiterose on Saturday. People’s disregard of disabled parking spaces never fails to amaze me but we managed to park in one. Used my mobility scooter for the first time. It was worth every penny. Can’t wait to use it more. Means I can use it between the shops and park outside and use crutches in the shop. Perfect. Most shops are a nightmare to get a wheelchair round. And can’t wait to go to the park either. Although judging by the weather I might be waiting a while ha.

Diet is still going fine and as cars are sorted can go back to my normal slimming world meeting and be on the social team again which I love. Only thing that concerns me this weekend is not eating enough as slept so much. But have a few days to eat more before weigh in so fingers crossed.

Taking a friend car shopping on Saturday so get to play in my new car ha. I can’t wait. It still seems surreal that I am getting a brand new car. I have never spent more than £600 on a car ha. This one is £16000, slight difference ha. I struggled to not feel guilty getting this. Don’t get me wrong. It isn’t free as you lose part of your disability payments. But it feels like a reward for being disabled ha. But Rob and a friend have put my mind at ease. Also using my back pay to buy Rob a decent car. We have had hell with cars this year so think we deserve a little less stress.

Only a few days until I pick it up eek.

Really need to go swimming but just not excited about coming out into this weather. Been thinking about putting a hot tub in conservatory. OK I understand this is quite elaborate for a terraced house in one of the worst areas in the country to have a hot tub. But it is meant to be amazing for arthritis and I can’t get in and out of the bath at the minute and they are meant to he easier. Something to think about.

Ooh I bought myself a new laptop. So giddy. Bought jess one for Christmas and it was a bargain so decided to treat myself. Need it for Avon, and blog and spend most of my life on my support group now. Only downside is that because it’s the same as jess’s I can’t play with it until Christmas or hers won’t be a surprise. She knows she is getting one but if she uses mine first it won’t feel special. So sadly there will probably be more blogs once I have that ha.

Aww finley made my day earlier. I automatically say love you all the time to the kids. He was walking up the stairs and he said it back. Was over the moon. First time he has said it and in fairness it won’t have sounded like that to many people. So proud of my little man x

I hate this!!

Am laid in bed on my husbands first day of holiday so fed up I could cry. So we went to the air show at Blackpool yesterday. We hadn’t anticipated how busy it would be and couldn’t get into Blackpool and then couldn’t park. So pretty much missed it. Then I was at loggerheads with my mum for the first half.

I hate how my life is heading and I just don’t need to hear advice from people who have no clue. Particularly when it comes to my son who has special needs. He was in sensory meltdown yesterday. I was in meltdown as was in my wheelchair for the first time. And then unhelpful comments are made and I lose it. I just wanted to go home.

We did have a chat and me are rob have agreed days out are too much. I tried to help drive on the way home. I lasted about 20 mins and then the Dizziness got to me and I was scared. My kids were in the car. So we had to pull onto the hard shoulder and switch drivers.

I just feel so useless. I walked as much as I could. But when I walked everyone had to slow down for me. Then when I did walk rob had to push me.

So we got home late and I collapsed into bed. Slept for 9 hours. Have been up, had breakfast and now am so exhausted and in pain everywhere I am back in bed. Very aware I am working tonight.

I just want to be well again……I hate this.

Relationships

Just been talking on one of my support groups. There are just marriages and relationships ending constantly.

Ít does scare me. I have been with my husband 15 years. When Finley was diagnosed as being special needs we were warned the divorce rate for couples who have children with special needs is very high.

Then I was diagnosed and again warned divorce rates are high.

So basically we are screwed ha.

I have very little in the way of help. I aren’t good at asking for help or at accepting at. We do have someone having the kids overnight for the first time on Tuesday night so have booked a hotel. To spend some one on one time together.

We have never used childcare and have always worked around each order. Which basically means I work around him and work horrible hours. I currently work 24 hours a week, I am a full time mum and lose 2 nights sleep a week to manage that.

I do get snappy and horrible. It’s nobody’s fault but I get so fed up before work. Rob will come in and complain he had had a busy day and is tired. Well yeah so have I and at least you go to bed. I aren’t sure what he can do to be more understanding. I think I maybe deserve an award ha.

We have had a lot of crisis talks recently but have found the problems and how to fix them. He is applying for new jobs which may help. At the minute he can not even be 10 mins late if I need him. He cant attend my appointments or Finleys and I sometimes feel very alone.  He had to take a day off when I was really ill and collapsed a few weeks back. And all he gets is crap. So I understand its horrible for him. But I just need a bit more support. Hence he needs a new job. And for me I need to work out how financially I can cut down.

Anyway sleep is calling. The conversation on the support group but prompted me to put my thoughts down on here.

I an struggling to write and type though so that’s the next thing I need to look into.

Sleep time seen as been awake since 6.30 yesterday morning.

So hopefully we are trying. Have found the problems and are attempting to work together.

I don’t know what I would do without my 8 year old. She helps me and her brother when I am bad. Something that’s had to go on my disability application. As when he is in meltdown some days I can’t physically deal with him alone. She is amazing. I genuinely don’t have anyone I can ask to nip over when I am struggling. I make sure she still has her childhood though. Luckily she likes helping.