practicalhelp

[practicalhelp]

THE BORING STUFF

It’s been a helluva couple of weeks and it’s reminded me that there are soo many irritating things involved in keeping yourself afloat in the midst of a flare up. I’m actually not even sure where to begin but it seems logical to list the issues that have come up for me recently as I know that unfortunately, they will come up for everyone who suffers with a chronic condition at some point. In the past few weeks I’ve started a new job, had my first pain clinic appointment, had a day treatment at the hospital (requiring sedation and day or two of recovery), had my period (awful), had a number of GP appointments, sent off a claim for DSA (disabled students allowance), applied for an extension on a uni deadline (due to hospital/period/illness/work) and attempted to keep up with all missed lectures and tutorials due to work and sickness whilst trying to keep myself fed, watered and relatively sane. And if that doesn’t seem like a lot, imagine doing all those things while feeling like you’re dragging a led weight behind you everywhere you go, having a hazy memory and slow reactions due to heavy duty pain meds as well as the extreme fatigue and low mood that endo flare ups bring. Not to mention my fun new symptom.. completely numb legs and horrible joint pain?! What is that about. Ultimately having a chronic illness (or two, or three!) feels like a part time job. There is so much planning involved, so many forms, calculating the best dates to do things so that you don’t let people down and the financial stress of working out how much medication and hospital trips are going to cost you. I don’t know if people realise quite how much work has to go into these things before you can allow yourself to relax and heal. I’m so so lucky that I have a network of extremely supportive and helpful people at my fingertips, who overwhelm me with their kindness and understanding, but I’m sure many of you are familiar with not wanting to feel like a burden on them and trying to do everything yourself. It gets overwhelming. The past few weeks, I was overwhelmed. I feel quite positive at the moment having come back from my treatment last week with news that there doesn’t appear to be endo on my bowel and that the extreme pain is just (another) unfortunate side effect of the condition. It sounds strange to be positive about that, but it means going ahead with trying some different pain relief targetted more to IBS symptoms rather than surgery (for now) so it feels like a small victory and I think it’s important to treat it like one. BUT the general chaos has caught up with me and I know I’m trying to cram too much in at the moment. Although they’re all positive things that will improve life in the long run, the combination of them is exhausting and finally, this weekend, I have a couple of days to regroup and readjust. I try really hard to handle things practically and as efficiently as possible these days, rather than let my worries build up and feel like something unmanageable. This is a lot easier said than done and luckily I’m in quite a stable and positive mental state at the moment which helps HUGELY in the organising of my day to day routine. For me, it helps to divide my life into five sections: uni, work, money, health and social life. Instead of feeling completely overwhelmed by a swirling mass of problems, I’ll think about how I can improve each of them in small ways and it feels a lot less daunting. I often feel like as one gets worse, so does another. What happened this past couple of weeks goes like this: work was busy and stressful, so uni work suffered. I was feeling tired and ill so was spending money on unnecessary things to perk myself up as well as more expensive food because I had no time to food shop. I got my period which along with being mega painful, turned into a vicious coldy run down bug which dragged on for longer than it should have because I wasn’t letting myself rest. And the idea of a social life at this point is laughable, although going for a drink on Monday night in an attempt to be a regular carefree young person resulted in me throwing up all of Tuesday because my body likes to punish me for trying to be normal. And why the throwing up? Probably because I’m out of my stomach meds and had no time to get them as well as the fact that I’ve started a new contraceptive pill which has historically given me an upset belly for the first couple of months. Constant, niggling, little problems that add up total stressy meltdown if not monitored. Incredibly boring explanations aside, I guarantee that if you separate your life into sections right now and try to think up easy solutions to the problems in each you might feel a bit less overwhelmed. If you’re thinking that this method seems familiar - you got me. It’s typically used in CBT sessions for anxiety and quite honestly it’s the only useful technique I ever got out those sessions. I’m thinking I’m gonna do a post on each of these five topics separately because I have been blessed with two solid days off and also - there’s a lot of shit to get through. For now let’s talk about moneeeeys and how to not lose it all on paying for meds! Essentially, financial help means a million forms that can be difficult to fill in. As I’m a student I can claim for DSA (Disabled Students Allowance) which is relatively straight forward. If you’re in education and suffer from endometriosis or any long term health condition (including a mental health condition) it’s definitely worth getting in touch with the Disability team at your college/university. I initially felt as if I wasn’t ‘ill’ enough to be entitled to help from them but a quick chat with them let me know that they would help me in any way they could. Sometimes you get so used to the complications and negative aspects of managing illness that you forgetting they’re even happening to you, and it’s useful to make a third party aware of that they can remind that you that you do need extra support. I’m also applying for financial help with prescriptions and travel costs through the NHS, using an HC1 form, Again, this is a super long, boring form to fill out and because I now have a part time job I’m not sure what I’ll be entitled to. But it really is all worth doing and you never know what you might gain from it. Head to the NHS website and you’ll find a form for almost every situation that is usually worth having a skim through. You can also go to a local pharmacy and ask if they carry any of these forms or even if they have a moment to speak to you about getting financial help with prescriptions and hospital visits. The same can be said for your GP and they’re usually very willing to help. Aside from HC1 (and HC2) forms, there are Prescription prepayment certificates which allow you pay for prescriptions in 3-month or 12-month blocks which ultimately saves you money and mean you pay no more than £2 a week for the meds. Obviously, this is dependent on how many prescriptions you’re currently on, and this is something I need to speak to my GP about because I am confused and maths is not my strong point. There’s also a page specifically for students on a low income here. On that note, a lot of the financial stuff is difficult to get your head around and it might be helpful to ask a friend/colleague/medical professional to help you understand it, especially if you’re pain and have a lot on your plate already. The theme that will run through these posts is this: don’t be afraid to ask for what you need. Even if it feels difficult or awkward at first, it will get easier as soon as you realise how much it will benefit you and how willing people are to help. If you buy any over the counter medication AT all, always ask your GP if it is cheaper on prescription because it often will be. This goes for any pain you may have, even if it isn’t necessarily related to your condition. For example, I would pay a fortune for fancy herbal IBS remedies and peppermint oil capsules and god knows what else when there is usually a very similar product available in bulk from the GP (i.e. mebeverine/colofac). This was also the case with the antihistamines I was taking and can even go as far as medicines you buy and don’t think about like antacids and vitamins. It’s always worth explaining your situation to your doctor and seeing if there is a more cost effective option. The same rule applies when you are buying over the counter, for example when you don’t have time to get a prescription or when what you need can’t be prescribed (like my beloved heat patches waaahh). The pharmacy will have branded products and then they’ll have other options with IDENTICAL ingredients for a fraction of the price. Ask the pharmacist for the cheapest possible option as long as it has the same desired effects and basic ingredients. Don’t buy health stuff from Poundland though because in my experience you will get a rash (and use their heat pads with extreme caution - they’re lethal). LASTLY, sounds like an obvious one but it’s where I often let myself down health wise - know what to eat to make you feel good and always have a lot of it in the house! Ultimately you never know when you’ll be struck down by your temperamental illness and it’s best to be prepared and not fall into bad habits (like constantly ordering pizza even tho it is godly and delicious). My advice is to online grocery shop (Asda is a great option with only £20 min delivery) and stock up on cheap, healthy food whilst monitoring what you spend. My latest trick is to always have excellent smoothie ingredients in so that if I’m mega busy and feeling run down I can make super nutritious, filling, vitaminy, tasty, drinkable meals. Vitaminy is a word, I’ve decided. Have a gander at Holland and Barrett’s website as they always have mega good deals on vitamins and smoothie mixes to keep your immune system in a good state! But also don’t replace meals with smoothies because that’s mad. Also eat non liquid food plz. Next post will beeeee… how to stay sane when your employer doesn’t give a fuck that you’re in debilitating pain! Or more eloquently put: knowing your rights in the workplace as someone with a disability. Hope this made some vague sense and feel free to message me with questions!