Disabled AND a parent? Don’t be silly.

Right. I’m not a natural blogger, so apologise for the state of this before you read it. The point of this blog was more for me to keep track of stuff than for anyone to actually read it. But I’m getting genuinely pissed off with an issue that keeps cropping up, and need to share it with the world.

It is possible for a disabled person to be a parent. It is possible for them to become a parent when already disabled, and even to become disabled after becoming a parent.

Nothing and nowhere seems to take this into account. From my current argument with the bus company that I have to pay for a toddler travelling with me (when it would be free for an able-bodied adult to take a child), to the old one about providing a “wheelchair” space, but nothing for a parent who cannot fold his/her pram they are pushing, to all family deals being based on two full priced adults (and yes, sometimes one, as single parents do officially “exist” now in the land of zoos and family attractions). 

Schools do not take a parents disability into account when you apply for a place, nor can they arrange for non-disabled children to be included in the transport available for disabled children. So yet again, my son has missed nursery today (luckily it’s only nursery, when its school I’ll be fined for it) as I was unfit to take him. Because not only is he not in the closest nursery, I have to catch a bus to the next one (paying for both him and his younger brother as they arent included in my bus pass), and then I can’t manage the walk from the bus stop to nursery. I’m not allowed to drive by the way, before anyone complains that I should, as I faint. A lot. I am entitled to a Personal Assistant from social services. But they can only help with MY care, not my children. Not that I can find anyone that can work the hours I have been given. Because its not a full time job, my husband is expected to care for me and both children at any time when he isnt in work. And he doesnt get carers allowance for that either, by the way.

Anyway, got a little distracted there! Train stations will provide someone to push a wheelchair for me, while my husband is expected to deal with two children and our luggage on his own. The airport refused to allow one child on the golf buggy with me. What would they had done if I’d been travelling alone with the children?

As I said, bus companies acknowledge that they need to provide wheelchair spaces, and then kick disabled parents off buses for daring to be unable to fold their pram. This is illegally discriminating against a disabled parent, and is covered in the Equality Act, yet people hear disability, and think single adult in a wheelchair. But what can we do? We’re already struggling with the shit hand dealt to us, trying to make the best of it for our children. I don’t have it in me to fight to be recognised.

Spaced out

I have been panicking for days that there is something else wrong with me. Feeling spaced out and dizzy, like I’m not really here. Sick and very tired, yet not sleeping properly. Thought it might have something to do with my new painkillers, so stopped taking them, just so I could put my finger on what was wrong. No change. Today I woke up at 1.30pm, much to the annoyance of B, who had gotten up with the children. It was only when I spoke to my mum that I remembered my antidepressant dose had been increased, and realised that everything I was feeling was that! Doh! So apologies for the lack of writing, and the not-too-great writing today, hopefully it will only be temporary.

 

In other news, anyone who has read my twitter may have noticed a bit of a mission, to get people to notice the slightly peculiar activities of a certain MP. I won’t go into it here, but I will say that he is on my radar because of the blatant scaremongering to all parents with mental health issues. It was after this that I saw him arguing with people on a parenting forum, and posting confidential information, and I think that deserves to be brought to peoples attention. Anyway, I’m not going into it here so <zips mouth>

PIP

This week I had my PIP assessment. I applied back in July, though me and B (my husband) decided that it was not worth the anxiety it was causing me, and didn’t send off the forms. Quite surprised when they arranged my assessment even without the paperwork. Since my original appointment, they have since made two appointments to come to my house for the assessment, and no showed for both of them. For the third, the appointment was in their office. No parking nearby of course – when you’re a company contracted by the government to perform assessments on sick/disabled people, having parking nearby would just be too much common sense, wouldn’t it.

So we were off to a good start when I was in tears before we got there because of the walk. The actual assessment itself seemed to go okay, the woman who did it was lovely, and said that the weakness I have was obvious. Knowing what “they” are like though, I’m not holding my breath.

Now we play the waiting game…

In other news, I have been completely floored this week by a common cold. Fun. 

That big black dog bubbles over

Not really feeling up to writing much today.

My husband suffers physically and mentally because of everything he has to do for me and the kids, and he also has long term depression. Due to his work patterns, he can’t take antidepressants, so pretty much ends up holding everything in until it bubbles over. Today has been a bubbly over day. So he feels shit, and I feel shit and there’s nothing we can do about it.

We argued, nothing was achieved, and he has gone to the pub.

Physio

Well, it was okay, I didn’t get the “hypochondriac” look, which is always a plus :)

Mainly just went through background stuff today, and a quick exam. Have to go back in a few weeks time to start the actual programme.

In other news, it would appear my youngest no longer wants to breastfeed. Which means I can start on the proper drugs soon, yay, haha.

Tough day

Had a meeting in the next city to mine today, so now it is 8pm and I am struggling to keep my eyes open. Bit of light reading on cardiovascular disease, lol (am studying), then an early night.

It was about 100 metres from the train station to the office, yet I had to stop three times as I was in agony. It is ridiculous how useless my body is :(

And I really enjoyed it, but five hours of paying attention has left me seriously flagging.

Very glad my mum has the boys tonight so I can have a proper nights sleep. First physio session is tomorrow and I am terrified. I do not deal well with the unknown! What if they don’t “get it” or tell me to just pull myself together and get on with it? The swelling is obvious enough, but I can’t show them pain, and there’s no way they can witness the fatigue that comes after.

Background…

I was first diagnosed with psoriasis as a teenager. It was only my scalp, and not really too much of a problem. Through my early twenties, it came and went of it’s own accord. There was a patch in my mid-twenties when I was suffering with depression and anxiety, and it caused the psoriasis to flare too, but still only on my scalp.

It cleared up completely in my first pregnancy, and then although it returned in the gap between my first and second child, it was far from it’s worst. Cleared up completely again in my second pregnancy.

Then, when my second son was about 3 months old, it started. Chronic fatigue and aches all over my body, that I attributed to normal postpartum tiredness or even to breastfeeding and pretty much ignored. My scalp psoriasis flared to the worst it had ever been, and great big clumps of my hair began to fall out. My wrists became so painful that I struggled to pick up my baby boy.

Luckily, I then noticed a patch of psoriasis on my chest, and realised that this was not just my body recovering from two close pregnancies. I visited the GP who knew straight away that it was PsA and referred me to the rheumatologist.

While waiting for my referral, it continued to worsen. My fingers and toes swelled, my back constantly ached and other random joints joined in too. The patch of psoriasis on my chest spread to cover my front, both arms and both legs. My hair became so thin that I began to wear a wig. I was in constant pain.

Since then I have seen the rheumatologist a few times, and tried a variety of treatment, yet my arthritis is no better. My body psoriasis however did clear up over the summer, only to return all over in September.

Right now, my mobility is severely affected, even small amounts of walking cause huge pain, and any “busy” days are followed by awful fatigue. I rely on my husband and family for so many things, and feel so guilty for all the things I struggle to do for my children.