Reading my last blog post my little sister V offered to have my boys for a few hours on Sunday so me and the husband could go out without the kids.
When I agreed to it it seemed like a great idea and very thoughtful of V to offer out the blue. Even though I slept relatively well I woke up still tired. Almost like I’d not slept. The kids woke up stupidly early and to be honest I just wanted to stay in bed. I didn’t want to get dressed, I didn’t want to go out. I don’t know what was going on. 6 days a week I get up I get the kids clothes sorted, I do the washing, fold clean clothes, feed the kids and get them where they need to be on time without fail. On a Sunday generally I stay at home in my pjs and I do nothing.
I got upset and wound up and made myself crazy about getting ready to go out. I just didn’t want to go but I don’t know why. What’s so wrong about going to lunch with my husband? The time we were to drop the boys off would have been the time my youngest needed a sleep. Knowing he wouldn’t settle for anyone I decided to let him sleep at home in bed. I cried as I cuddled him. Thinking I’ll never hear the end of it if I decide to not go. My husband will hold this over me for life. I try to tell him I’m not feeling great he thinks everything can be solved with sex, a hug ir watching a film. None of which i am remotely interested in. I want understanding, I want him to stop pestering me and pressuring me to spend time with him. Keeping my shit together all day is hard work. Nursery, school runs, everything else is tiring. By the time the kids are in bed I’m knackered. I just want to be left alone to lay in bed, watch tv, blog, write or draw. By 9-9:30 I’m ready for sleep.
I know it sounds selfish but I make sure my kids come first in every desicion I make every day. So when they are in bed I get to be selfish I get to think about my needs and what I want. So that’s what I’m going to do. I don’t get much time to myself so I evhiy by evenings to myself.
This week I meet my sons health visitor for a chat and a catch up while he’s at nursery. This causes anxiety because I’m used to seeing her at home while he’s around. I also meet my peer link worker for the second time also causing anxiety. I hate it I really hate it.
After feeling really low around my little boys heart Anniversary I gave myself a kick up the arse and told myself to suck it up.
It kind of worked, I did pick myself up a bit but as I’m learning recovery from depression isn’t that straight forward. This week or so has not been easy. I met someone who is suppose to support with mental health issues at a training centre. I didn’t really think much to her. She didn’t make a very good first impression to me. Instead of being supportive she kind of just told me my marriage has gone horribly wrong. Thanks love thanks for that. That’s really what I needed. I come to you and explain that depression and anxiety is one again affecting my life and she doesn’t offer and support. She has no children so she can’t possibly understand how hard it is and how mentally demanding it is having 2 children with additional needs. I felt worse coming out of there than I did going in. I’m suppose to go back in about 2 weeks.
Earlier this week I met up with a peer link worker. This was actually really helpful the women I met was lovely. She listened she didn’t judge, she said she experienced similar things. She said she can help she can be someone I can talk to. She recognised how closed off I was, all the anxious habits I have that I didn’t notice. I meet her again this coming Thursday to have another chat and try to get to the bottom of the triggers.
Today I had a hospital appointment I was dreading. Genetics. I text a former support worker on Wednesday to check if she could still come to the appointment with me she said it was still fine. I felt relieved she could still go. Today she text me and said she has to cancel. Her daughter was sick during the night and she didn’t want to leave her. I appreciate that these things happen but I just cried. I didn’t want to go to this alone. Anxiety was telling me she planned this to make me face this alone. Anxiety said that she could have left her for just a couple of hours. I wanted to cancel but I didn’t have enough time to do it. I only had 2 hours notice before the appointment time.
I have felt so crap so low so anxious all day. I went to the appointment alone I had no choice. I told the genetics doctor I had no interest in my son having any tests done. When the referral was made he wasn’t walking and he was quite far behind in his development. That was their concern however it’s not mine. He is catching up, he’s behind yes but that’s not Genetics it’s the fact he has a heart defect that limited what I could do with him. He was either constantly sleeping or feeding until his surgery. He wasnt being stimulated enough it’s no wonder he was behind. He has his surgery at 5 months old he was in hospital for 2 weeks. Then after surgery he had to recover.
It’s no wonder the poor kid is behind. Maybe it’s my fault maybe I sheltered him, over protected him. Just like I blamed myself for his heart defect.
I’ve basically felt shit all day. Crying on and off since 9am. I can’t wait to just crawl into bed and go to sleep.
So I said that the charity that was the main support for me had lost funding so they couldn’t keep going with the sessions i was going to. A friend of mine V went to a counselling session for herself today (same one that I am suppose to be starting in a couple of weeks.) she was told that she can’t be seen anymore because she’s also lost her funding. It comes as yet another blow because I’m changing my son’s nursery day specially to fit around this counselling. I was told it would be every week on a Thursday but turns out it would have been every 6 weeks. But it looks like it’s not gong to go ahead anyway. I was relying on that to make me feel better and get better from this relapse. I was relying on to open up old wounds and get rid of old demons still haunting me, but now I can’t. What the hell will I do now? How am I ever going to feel better? And stop letting my past haunt me? How will I ever be able to talk about it.. I can’t go back to S2c because that will feel like a massive failure on my part. I tried other counselling and I couldn’t do it. I’ve fucked up my only chances to get real help.
I now have this genetics appointment through for 29th September at the hospital we always go to so I don’t have to travel too far. But to be honest it’s not the travelling I’m worried about. It’s the blood tests, the questions, the results, the whole fucking process. It’s not like it’s just one appointment. It might be 3 or 4 or whatever. What if there a genetic problem? I mean come on I’ve got one child with autism and one child with a heart defect it’s gotta be somehow my fault. I created them it’s my doing. My body let my kids down. I won’t have any other children now, i can’t put myself that through any of this again. There’s a possibility my youngest as well as having the heart defect could also be autistic. I can’t deal with it. I just try to pretend everything’s ok. My head is a shed.
Having an autistic child is extremely challenging it will make you question on a daily basis what you do wrong to start a meltdown. It’s tiring, it’s frustrating, it’s draining and upsetting when I don’t know how to help him sometimes. I wanna protect him from the world who judge him because he has a sensory disability. He hates hand dryers and we have to use the disabled toilets so he doesn’t hear the hand dryers. We get stared at for using them because people presume having a disability means a physical disability. He gets overwhelmed when its crowded, he gets overwhelmed at birthday parties. It’s a daily struggle so I can’t cope with two of them being autistic. It’s hard enough with one let alone both.
The youngest with his heart defect is seeing him before his operation struggling to finish his bottles because he got breathless quickly. He constantly fed. He still gained weight but he was always feeding. He wasn’t allowed to cry for long periods of time because he turned blue. Then taking him,down to the theatre and kissing him goodbye for what you think maybe the last time. Waiting for news for the longest 5 hours of my life. Seeing him in picu hooked up to machines breathing for him giving his heart a rest. It’s something you never get over. The struggle didn’t end after surgery it’s not like surgery is a cure it’s just fixes his heart his heart will never be normal he will always have tetralogy of fallot. This is why I will never have more children this is burned into me for life. I can’t take the risk of having another child with a heart defect.
Some days I don’t really have much to feel in the way of anxiety and depression in this relapse. It’s weird I can go from one night feeling absolutely shockingly shit. I’d be crying, writing over thinking and feeling like I could crawl under a rock and not come out. Then the next day it’s almost as if I didn’t feel that shit, that upset, that bad. Is that normal? Is that how this works or is this what I’ve had to get used to doing and now it just comes naturally that I have to pick myself up and get over it?
Night times are the worse. I feel stupid because I want to be alone. I don’t wanna socialise at night once my kids are in bed but then everything comes pouring out and the tears start to fall and I feel lonely as hell. My husband doesn’t get it he thinks everything can be fixed with a hug. I don’t need outsider support because I have him. I tell him I didn’t sleep well funnily enough neither did he. Even though we don’t share a bed. I co sleep with my 2 year old. I’m happy with my arrangement. I feel like shit guess what he does too. I can’t win whatever I do he has it much worse.
That outsider support is what I’m missing I need that someone not connected to my family or my personal life to talk to. I need that outsider perspective. Someone who asks me if I’m ok because they are genuinely concerned and wanting to make sure I am. I went to the open door sessions where kids can go and play and have a snack because it was judgement free (most of the time) now more so because there’s more understanding that my 2 year old has tetralogy of fallot and that despite being repaired it’s a life long heart defect. I don’t know what I’m going to do there’s still so much going on I’ve had a mini break from it all a taste of life with hardly any proffesionals involved and now all of a sudden once September gets here it’s all going to start back up again. He’s making great process with speech being the exception so I don’t know why I’m so worried.
After my last post was so positive I’ve been avoiding my blog. Things were going really well and I honestly thought my troubles were behind me.
I didn’t realise that anxiety is a bitch and without warning it will creep on you and attack you again. I’ve been feeling bad for a few weeks now. Not as bad as I was but bad enough to notice I’m not feeling right. I can’t get a restful sleep or when I do sleep I’m still knackered. I wake up and anxiety is there in the pit of my stomach. I wish I knew why. I maybe know part of the reason I saw a person from my past twice within days of each sighting. Since then I’ve not been right. The 6 weeks holidays have been hard and pushing me to my limit. I haven’t had a lot of time to myself, I’ve had both boys for 5 weeks and the last two weeks my husband at home too.
We had 5 days away at my in laws it was nice but it wasn’t a holiday. I missed having my own space and my home comforts. They let my 6 year old get away with murder, they gave him all the attention he craved and then he went off on one when he no longer got it. It was hard work.
We got home and we had a massive fight once the kids were in bed. Same fight we always has, he thinks I do nothing while he goes out to work etc etc. I was fuming and upset I threw my wedding ring at him and told him I was done. I packed a suitcase full of his clothes told him I wanted him gone. He never tells me anything, I tell him stuff it’s met with eye rolling and disgust. I’m hanging on by a thread. I keep trying and trying to make it work but I don’t know how much longer I can keep going. I’m giving it one last go then I am done permanently. It’s hard feeling the way I do because even though I’m trying to not feel down and anxious I can’t pretend. I am fighting a losing battle everything around me just feels like it’s ready to fall apart and here I am trying to keep it all together.
I feel like a failure for having everyone tell me how well I’d done and how far I’d come and now to admit to them I’m not doing so well feels like a massive step backwards. Even though there’s been little no appointments I still have a lot going on. I have appointments waiting to be come through, once September gets here portage starts back up, I have to settle my 2 year old into nursery and wait for genetics to send an appointment through. I also have a speech and language review for my 2 year old coming up in the next month and a meeting with all professionals so it’s still a lot to juggle.
I’m letting everyone around me down while once again I struggle with anxiety and depression. My main source of support from the charity has stopped they have no funding so that it’s my support has ended. The family support worker was going to come with me to genetics appointment because I didn’t want to go alone. She was there when I felt low and needed someone to talk to now I feel completely in my own. While I don’t need as much support as I did I still need that person there. I hide things away from family and close friends because I’m ashamed that it’s getting to me again. I held off my blog, my safety net because I felt like a fraud saying how well I’d done to now feel so shit. There’s so much going on not even I can explain it. I just keep it all to myself. I’m lucky that my youngest has a health visitor still (she’s a new one) been involved since before Christmas and she’s lovely she’s really supportive. I know she’s not gonna be around and able to visit as I need so I don’t know what I’m going to do going forward but I need to do something because I’ll be damned if I’m going any further down than I am now.
This morning I cried. This morning I put my head in my hand, and let the tears fall.
I’m not grieving.
I haven’t been seriously hurt.
I don’t feel unloved.
Or any other obvious reasons to weap.
I cried because I’m tired.
No not just tired, it’s way beyond that.
My body is screaming at me.
I feel like my body is shutting down bit by bit.
Tiredness so severe it hurts.
I’m 10 years into this life, as a parent to a disabled child.
I’m 2 weeks into the summer holidays. And my body is failing me.
Imagine running for hours and hours every day of your life, even when you need to stop because your legs are weak, but you can’t.
You do it day after day, year after year.
Then a period of time comes (7 weeks long ) when you have to run 20 hours a day on your already weak leg’s , you push and push because you can’t afford to stop.
Being a parent to a disabled child is running from eyes open to eyes closed, and some in between.
We can’t just ” get a good night sleep and feel better in the morning ”
We can’t have a pj and movie day to rest.We can only push and push. ‘ come on body, we can do this ‘ I cry.
I saw this on Facebook just an insight to special needs mums lives.