Kind strangers

While waiting to leave Cambridge railway station, a woman leant across the aisle to say she could help with my bags when we got to London. I looked at her, bemused. It turned out that she’d overheard me telling railway staff that I had rheumatoid arthritis and asking if my sister could come through the barrier to help carry my bags onto the train. She’d also seen my sister lug the bags onto the train and wave me goodbye. When we got to the other end, true to her word, she carried my backpack to a taxi and I took the other 2 bags. Her boyfriend looked a bit surprised that she was so determined to do this! She didn’t expect anything in return. The taxi driver also gave me a hand with the luggage when we got to the flat. In the old days I would have felt embarrassed but not any more. I’ve accepted that at the moment (but hopefully not forever) some things like carrying heavy bags are more difficult. Today, I asked another stranger to open a water bottle as I’d forgotten my special flower-shaped jar/bottle ‘opener’. She did it straightaway, no questions asked. People don’t usually mind at all when you ask for help, and regularly offer when they see me struggling. It makes city living feel a bit less daunting – especially when negotiating public transport (avoiding rush hour, which is always a stressful experience).

As for Humira, I had my fourth dose today (20mg by injection). I’m going to have 20mg each week for several weeks to ease into it gently. (I had a mild reaction to the first 40mg injection, which was serious enough to end up in A & E yet again). The standard treatment is one 40mg jab once a fortnight. Hours later, I’m feeling slightly groggy, with the usual ‘hungover’ feeling that I tend to have on injection days, but otherwise ok. Fingers crossed that this will be the drug that works for me. I’m very aware that I’m on a ‘sub-optimal’ dose at the moment and am actually keen to get onto the higher dose. It’s amazing how my attitude has changed over the last year. After trying several drugs which didn’t work and gave me terrible side effects, I thought I could get better through diet alone, but developing bone erosions jolted me into realising that drugs were a vital part of tackling this disease, as well as improving my quality of life. At the moment, my health anxiety is so severe that a specialist nurse is administering the injections, but one day I want to have the confidence to self-inject. Here’s hoping that in 2014, I will.

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4 thoughts on “Kind strangers

  1. Oh I can so relate to not not wanting to travel during rush hour. I try to avoid it as much as possible. It’s a little hard during work days but I try to go to work earlier if possible in order to make sure I can get a seat.

    I hope Humira will make you feel better. I use Simponi once a month and the same night I always sleep so good. ๐Ÿ™‚ Simponi has been like magic and I’m feeling better then ever. I’ll keep my fingers crossed that the same thing will happen for you with Humira. I’ve had Simponi for 2 years now. I’m terrified of needles and when I had to change to this medication they gave me a “pen like” syringe instead of the normal ones. I never see the needle and I just press a button and “the pen” does it’s magic. ๐Ÿ™‚ Very convenient. Are you still on a special diet even if you have medication now?

    • Thanks Cecilia. Iโ€™m worried about going to back to work as Iโ€™m not looking forward to the rush hour experience! Great to hear that Simponi is working well for you โ€“ thatโ€™s excellent news ๐Ÿ™‚ I really hope that Humira will be effective for me. There has been a slight reduction in the swelling in my wrists but I havenโ€™t had a dramatic change in my pain or energy levels yet โ€“ hopefully that will come soon. ๐Ÿ™‚ Good to hear that you can use the โ€˜penโ€™ โ€“ other people have said that they find it easier to use it than the syringe and Iโ€™m sure it definitely helps that you canโ€™t see the needle! I actually have some 40mg pens in the fridge waiting for when my nurse and rheumatologist think Iโ€™m ready to increase the dose. In terms of the diet, I am still avoiding certain foods like potatoes, and Iโ€™m eating loads of salmon, mackerel, fresh fruit and vegetables, but Iโ€™m less strict than I was earlier this year. I think itโ€™s important to treat yourself to cake and chocolate!!

      • Sorry for being so lazy with my responses! ๐Ÿ˜ฆ Have they said anything how long it can take before the medication has full effect? I don’t remember what they told me when I started with Simponi but a week after my first shot I had more energy than I’d had for a very long time(~2 years). My hubby said he didn’t recognize me. ๐Ÿ˜‰ After my second shot I noticed my joints feeling better.

        Oh I totally agree that treating yourself to cake, candy etc is important. I think the reason why so many fail with a diet is because they go “all in” and don’t allow themselves a little break every now and then. My hubby and I try to follow a Paleo diet, we still eat dairy though but lactose free as I noticed last summer that I’m feeling much better then. I’ve also noticed that when I do treat myself to (for example) a chocolate bar it’s often enough with 1/2 or 1/4 than the whole thing. ๐Ÿ™‚

  2. Hi, no worries – sorry I didn’t get back to you sooner! They haven’t said how long it will be before the Humira ‘kicks in’ but I understand it can be up to 12 weeks. I do have more energy but my hands still feel stiff – it’s hard to gauge how effective it is so far. I mostly eat the Paleo diet too but recently due to Christmas indulgence I got back into cake and chocolate again!! and actually, having this type of food seems to make my joints worse so I will be cutting them out again. I agree with you though that often 1/2 a choc bar is enough ๐Ÿ™‚

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