Thursday, 27 March 2014

Second Bladder Appointment, More referrals and a possible Catch 22.

I've really been putting off updating my blog for a while. My motivation has been rock bottom again and I feel I have to force myself to do anything (including getting out of bed). My sleep routine (if you can call it that) is still awful; which causes a vicious circle with my symptoms: Less sleep --> more fatigue --> more pain --> less sleep etc.

I wanted to have something to talk about.

Ok, so the last two appointments were with the Work Programme and with the Bladder Specialist.

Work Programme

Now that I'm stuck in the Work Related Activity Group, my adviser really wants us to do more to help with my skills. I am in no way ready to concentrate on this when it is taking all my effort just to get up, showered, dressed and eating. But I know that I have to comply. I suppose reasonable adjustments only go so far. At my last appointment, however, I had to let the adviser know that my dad's shift patterns may change to days very soon. I will not travel alone. If I get ill (whether physically or mentally) I want to be around someone I know well. Someone who knows that I have to go to the toilet a lot, I will be in there a while before I can leave the house, I'm in pain ALL THE TIME and travelling makes it worse, I get irritable when things don't go to plan, I get extremely self conscious and nervous in public. So I tried explaining this to her and pushing for phone appointments as confidence on the phone is a skill I need to build up. Apparently the Work Programme doesn't do this though. The best they can offer are taxis. I very rarely take a taxi; especially on my own. If I were forced to attend appointments this way, I'd end up getting too panicked to go out of the house and I'd be sanctioned for not turning up. She also wants me to try informal group sessions. I really don't think I'll be ready for them anytime soon, so I don't want to commit to this and face sanctions if I don't show up.

She told me to find out when my dad's shifts will be changed, and to let her know as soon as possible so she can talk to her manager. We were to have a phone appointment as well. Since then, we've had two phonecalls and nothing much has changed unfortunately. There's a very short window of time after my dad's shift will be over, where I might be able to just make it to the centre, but I doubt I'd ever make it on time because of the traffic. The adviser has told me that the DWP gives the Work Programme providers the rules as to how a customer (what a ridiculous name for someone with no choice) can engage with them. Apparently we HAVE to turn up, in person, every fortnight; although she 'might' be able to extend this to monthly visits. I've explained to her my struggles, and I know she's trying (unless there's something she's not telling me? We're told never to trust anyone who works for DWP or their contractors) but it really is the DWP's decision. So I'm screwed basically!

You have to be pretty damn ill/disabled to qualify for ESA. It is so strict, and the guidelines so restrictive that a person who clearly shouldn't be working (yet) may still be found "fit for work" just because they don't quite fit into those little boxes. Complex and fluctuating illnesses/disabilities are either underestimated or disregarded in the ways that they limit capability for work. For someone sick enough to qualify for ESA, as far as I know, reliability is going to be a tough trait to have. This is purely down to the limitations thanks to illness/disability, and is NOTHING to do with the character of the person. This is NOT their fault; although the government, media, society like to believe it is. And yet, on the Work Programme you are expected to be reliable. You must turn up to the regular appointments and can only phone in sick a few times before a doubt is put on your claim. You must be available for all phone appointments. If you've agreed to a particular work related activity, you must follow it through. If you don't live up to these expectations, the result is a sanction. Now I've already been threatened with one for missing an appointment that I'd never even been told about and with being late to an appointment (when I was having a panic attack). When dealing with physical and mental illnesses, being threatened with loss of your money is HORRIBLE. If I remember correctly, somewhere (on the internet) it said that sanctions were supposed to be the last resort; yet every single time they are used as the first resort. They are used as a punishment to dangle in the face of the vulnerable (I hope that term is correct, please call me out if not) to make sure they toe the line. It is absolutely disgusting and must stop.

I have this really bad feeling that I'm going to be put in a situation where my only option is to close my claim. Thanks to the PIP delays, this will leave me with NO income; so I will be relying on my parents to pay for everything. I don't know how we'll cope. And the saddest thing is that our situation isn't actually that bad, compared to a lot of people. We are lucky because we have a roof over our heads and we can eat. In the UK, in this day and age, that should be the LEAST that someone has. No one should be without either. And yet people are. And yet they are kicked further to the ground, BLAMED for poverty and given little to no help. It angers me so much.


Bladder Appointment 2

This appointment was rescheduled a few times so I was glad when I finally had it. The specialist is absolutely lovely and really gives you the time to talk through everything. At this appointment, we were going through how my fluid intake had changed, and whether the bladder training exercises were working. (See "Just Keep Swimming" post for details of the first appointment). I had managed to cut down my caffeine to one caffeinated drink a day (with the odd "cheat" day) and I didn't have as many citrus drinks, although I did have fizzy drinks. I still had the frequency and the exercises weren't helping to fully empty my bladder however. She also asked me what time I went to bed, what my last drink was/what time I had it. I told her it was usually around 11/midnight and was a milky drink or hot chocolate. Apparently hot chocolate is a bladder irritant too! So this is what I can/can't drink from what I've been told:

Do's:

  • Water
  • Milk
  • Milkshake
  • Horlicks
  • Decaff drinks
  • High Juice (less irritable)
  • Cranberry Juice

Don'ts:
  • Alcohol (very rarely)
  • Hot Chocolate/Cocoa (not at night at least)
  • Fizzy drinks
  • Cola (Big no no!)
  • Tea
  • Coffee
  • Other caffeinated drinks
  • Energy drinks (Even bigger no no!!)
  • Citrus drinks (orange juice, grapefruit juice, orange squash, lemon squash, lime squash)
  • Blackcurrant drinks

I'm going to have to go cold turkey on the caffeine now. That'll be fun!

Also, due to my problems with flow and retention, the specialist is recommending the GP refers me to a Urogynecologist for tests (possibly invasive ones) and more advice. She mentioned medication again and I told her that I wasn't completely ruling it out, as I'm fed up of my bladder symptoms being at the forefront of my mind. I'm to see her again in about a month's time, and in the meantime I'll have to give up/vastly reduce the irritants and carry on with the exercises. She said it will take a while; especially as bladder problems are also associated with the Fibromyalgia. I did mention the Hypermobility to her as well. My GP had dismissed it as part of the Fibromyalgia, but the more I read about Hypermobility/EDS the more I feel I should really get referred. The specialist agreed I should get a second opinion and push for a referral because hypermobility can actually affect the bladder! Well things are definitely starting to fit into place and make sense now huh! I'm really pleased with this specialist. She listens to me, doesn't dismiss things that affect me and seems to know quite a lot about this stuff.

Appointments coming up:

These will no doubt be the main topics of my next blog post. I have my Pain Clinic appointment at the start of next month and also (good news!) I'll be seeing a High Intensity Therapist for level 3 CBT the day after the pain appointment! So I guess I should start writing down everything I need to talk about with her. I have no idea how these sessions will go, but it is so good to know that my mental health isn't being ignored.

I'll keep you all posted anyway. Thanks for reading!


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